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

Danny Kruger Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Daniel Francis]

I hear that, and I think my hon. Friend and I are on the same page on many of these matters. I think there were some drafting issues when I discussed amendments with Mencap at an earlier stage.

I commend to the Committee the six amendments in my name in this group: new clause 12 and amendments 336, 337, 335, 340 and amendment (a) to amendment 186.

[Danny Kruger (East Wiltshire) (Con)]

I want to quickly indicate my support for the amendments tabled by the hon. Member for Bexleyheath and Crayford, amendment 290 in the name of the hon. Member for York Central and amendment 20 in the name of the hon. Member for Lowestoft about specific training on domestic abuse and coercive control.

I will now speak to my own amendments, which would require there to be a preliminary discussion before the signing of the first form. At the moment, the Bill allows someone to make the first declaration and state, “I wish to be provided with assistance to end my own life”, without any preparatory discussion about what that entails. It is significant that we heard evidence from Professor House—a professor of old-age psychiatry—that the preferences of the person doing the assessment can bias the capacity assessment. As he explains, we are much more likely to declare that somebody has capacity when they say they want to have the treatment we are offering them, but can we really be sure that the request is freely made and reflects the patient’s wishes?

The fact is, we still do not know from the framework of the Bill how the process would be implemented, but the assessor is likely to be one of a small number of doctors who are willing to do this work on the NHS or somebody who is working for a private provider. Research suggests that the assessing physician’s own personal values and opinions may bias their judgment of a person’s mental capacity. Effectively, research says that the doctor will say that a person has capacity for treatment when he or she wants them to have it or believes that they should. That is significant.

We see from other jurisdictions that the assessment process can quickly become a tick-box exercise in which proper consideration is not given to what might be going on behind the declared wish. In Oregon in 2023, only three people were referred for a psychiatric evaluation by the assessing doctor—down from 33% of people in the early years. It is clear that evaluators have become less cautious when they come to sign the initial paperwork. In California, less than 1% of patients requesting an assisted death are referred for a mental health assessment. These are significant warning signs for us.

I am aware that the hon. Member for Spen Valley has tabled a helpful amendment—amendment 419—to clause 6, which is the clause dealing with the requirement for proof of identity. As I said yesterday, this retrofits a requirement for a preliminary discussion before the process can proceed. It is good that the hon. Member recognises the point that a proper preliminary assessment must be done before the declaration is signed, but I simply do not understand why that should be in clause 6; surely it should be in one single, consistent place, here in clause 5, relating to when the co-ordinating doctor first meets the patient to witness their form. I hope we might recognise that if the principle is being conceded by the amendment tabled by the hon. Member for Spen Valley, we should put that change into its rightful place.

It is worth nothing that at the moment someone could get a proxy to sign for them. The proxy does not need to know the patient or be known to them; they just need to be a person of good standing in the community. They need to undertake no training at all. We have been talking during in this debate about the importance of training, but the proxy who signs on the patient’s behalf does not need to have any training to inform the judgment that they are

“satisfied that the person understands the nature and effect of the making of the declaration”.

Frankly, a stranger to the person, who is not a medic, can sign that declaration on their behalf. At the moment, they can do so without a preliminary discussion taking place. It is only after making that crucial declaratory statement that the co-ordinating doctor discusses the person’s diagnosis. I welcome the tabling of amendment 419, but I think it is in the wrong place. If we do not ensure that that preliminary discussion takes place when we are debating this group of amendments, it might be too late if amendment 419 does not pass, or if it is unsatisfactory, as I think it is.

There is another related problem. Amendment 419 would allow the co-ordinating doctor to confirm that a preliminary discussion has taken place. That means that the discussion could have taken place before the first declaration—in a sense, that is welcome, because that discussion should be taking place—but it does not have to take place with the co-ordinating doctor. The co-ordinating doctor, who is taking responsibility for the whole process of the assisted death for this patient, is not required to have this preliminary discussion themselves. They are not required to go through the very important process of properly discussing the assisted death and informing the patient of what it entails and what the other options are.

My amendment 359 would enhance the significance of the preliminary discussion. It would mean that the doctor who witnesses the declaration—who co-ordinates the process of the assisted death—has had the fullest possible discussion with the patient, and that they genuinely take responsibility for guaranteeing that the patient is fully informed and aware of all of their options. I urge the Committee to support these amendments as well.

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

I am very glad that amendment 427 has now been unstarred for today, because it develops on what I initiated yesterday with amendment 413, when we were discussing identifying the preferred language of the individual and whether that is Welsh or English.

Of course, if we have identified the preferred language of an individual, we would then take every step to make sure that we satisfy them and that we provide services in their preferred language. The amendment also recognises, when we are talking about specific individuals, possibly in a specific location, whether providing that is possible or not. I have tried to reflect that in using the terminology “all reasonable steps” to ensure that the practitioner has “fluent proficiency” in Welsh if that is the preferred language of the individual with whom they are conducting the initial conversation. Bear in mind, of course, that practitioners who can hold a conversation with fluent proficiency in Welsh will also be able to hold a conversation with fluent proficiency in English.

The “all reasonable steps” phraseology comes from legislation already extant in Wales in relation to educational tribunals, which again recognise that it may not be possible to find an individual with sufficient proficiency. We are trying to find a balance here between the pressure of time and being able to move ahead without having a bureaucratic thicket while also acknowledging that if we do recognise an individual’s preferred language, that we do take “all reasonable steps”.

As with amendment 413, amendment 427 is an amendment that I tabled having met an officer from the Welsh Language Commissioner’s office last week. It would establish a pathway for people for whom Welsh is their preferred language. Reflecting the comments from the Minister and the Bill’s promoter, the hon. Member for Spen Valley yesterday, I need to know—as do the Committee and the Senedd—whether this needs to be on the face of the Bill or whether it could be elsewhere.

I do not intend to push amendment 427 to a vote today, but we very much need clarity on this issue. I suspect that this may not be so easy to clarify as yesterday’s point. We are talking about the rights of individuals in one of the most difficult, emotional, intimate discussions of their lives. We need to reflect that those individuals have a clear right to use the language which they have a choice in law to use. We must make sure that we get everything correct in this Bill. Diolch yn fawr iawn.

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[Naz Shah]

I thank you, Mr Dowd. My apologies. I have made a mistake, but I was referencing the comments of the right hon. Member for Dwyfor Meirionnydd about the use of languages, which is the subject of one of the amendments; that is my understanding. But again, I am happy to be guided by you, Mr Dowd.

To come back to the issue of training and domestic violence, in Committee, we heard evidence from Dr Jamilla Hussain about minoritised women. Again, from the data collection of ethnic minority groups, training is right at the top of the agenda, whether it be training of doctors or specialists.

Language is important when it comes to training as well. When people are training or trained to look at coercive control and to spot that coercive control, there is often an interpreter between them and the victim who is being assessed. They may be an ethnic minority woman or a man from an ethnic minority background whose first language is not English, so that training would need to include cultural sensitivities in relation to spotting coercion and control, and to repeated coercion in particular.

These are subjects that are already taboo for people to discuss. We know the issue of domestic violence is hard to spot. We have repeated that time and again, as have others. We talk about training, but that has to go further when it comes to victims or people seeking assisted dying who are from ethnic minority backgrounds and who have different cultural understandings. I talked about yesterday that. The hon. Member for Reigate also talked about the issue: the understanding of assisted dying among ethnic minority communities is very different if there is a language barrier.

I would like to ask the promoter of the Bill, my hon. Friend the Member for Spen Valley, whether her amendment will go further in addressing some of the inequalities and intricacies that are presented when we are dealing with women from ethnic minority communities or elderly people from ethnic minority communities. I would be happy to sit down and talk her through those issues, so that I can support the development of her amendment to address the concerns I have raised today.

[Danny Kruger]

The hon. Lady talked earlier about the tragedy of victims of coercive control who commit suicide. Does she consider that the amendments we are looking at will help to address that challenge? What specific support does she think victims of coercive control would need to prevent them from taking that terrible step?

[Naz Shah]

The hon. Member asks a very important question. When I am talking about reflective services for black and minority ethnic communities, which is something I have delivered training on and worked on in a previous role, I often use the example of my mother, who was a victim of domestic violence. Had she been arrested by a woman instead of a man, her experience might have been different. Had she had a solicitor who was a woman, not a man, her experience might have been different. Had she had judges who were women, not men, her experience might have been different. Let us now add another layer to that. Had the police officer been a woman from the background she was from, they might have understood it.

The same analogy potentially applies to patients who are asking about going down the route of assisted dying, because it is helpful if somebody comes from the same cultural background. If a female victim of domestic violence or coercive control meets a specialist doctor who looks very similar to the hon. Member for East Wiltshire—a white, middle-class male—and he does not have that cultural understanding, he will then rely upon training, and he will no doubt rely upon an interpreter to translate.

That is the kind of thing I am trying to tease out, and these are the kinds of protections I want to see in the Bill. If we want a Rolls-Royce service, and if this is to be the best Bill in the world, it cannot ignore the most vulnerable in society. If the patient is a disabled woman, it is whammy upon whammy and layers upon layers of intersectionality that the Bill does not address. That is why I want to see the Bill strengthened.

I want to talk about the training that doctors get and the training in palliative care. We heard from Dr Jamilla Hussain, who was very clear about the fear among minoritised communities because of what happened during the covid pandemic, with “do not resuscitate” orders and their whole experience. Some people potentially died who could have been saved because they did not have the trust in NHS services to access them.

In this instance, it is important that we have a first doctor. That first doctor might have no relationship with the patient because their regular doctor does not want to engage in the process. Let us take the example of a patient in Bradford West who has had a diagnosis of terminal illness. They might well have a doctor or consultant who has been dealing with them for six months or even a year, to the point where they have reached the terminal stage. They might have a relationship with that doctor, who might have spoken their language and might be from a particular faith background but who does not want to engage in the assisted dying process. According to the Bill, that doctor would then have to refer that patient on to somebody who is prepared to have that conversation, but that person might not have that training or those language skills, and they might not—

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Amendment 359 would require the co-ordinating doctor to be the same person as the registered medical practitioner conducting a preliminary discussion under clause 4. The amendment would have the additional effect of requiring the registered medical practitioner who undertook the initial discussion to have met the specific training requirements and qualifications that the co-ordinating doctor will need to have met. That could have the effect of limiting the numbers of registered medical practitioners that can undertake the preliminary discussions.

[Danny Kruger]

Will the Minister clarify that point? Is he suggesting that because fewer doctors might be eligible or willing to conduct the preliminary assessment, we should not require it at that early stage?

[Stephen Kinnock]

What we are trying to say is that the important thing here is to ensure that, when the Secretary of State brings the regulations forward, the hands of the Secretary of State are not tied too tightly, so that the Secretary of State is able to bring together the right people, to deliver the right training, to achieve the outcomes that are required through the regulations. Our assessment is that this amendment would, in essence, narrow the pool of people available to do the training. That would seem to pre-empt the idea behind doing this through regulations, which is to ensure that there is up-to-date training that is responsive to where we may or may not be two years down the line from the Bill having its commencement. It is about having that flexibility and that ability to build capacity.

Amendment 340 would place the Secretary of State under a duty to make regulations requiring a co-ordinating doctor to have specific and up-to-date training relating to reasonable adjustments and safeguards for autistic people and people with a learning disability. I note that amendments 185 and 186, if passed, would impose a duty on the Secretary of State to specify the training, qualifications and experience that the co-ordinating doctor will need.

The consequence of this amendment would be to require the Secretary of State to introduce a further requirement on the co-ordinating doctor—to have undergone training relating to reasonable adjustments and safeguards for autistic people and people with a learning disability. In considering whether the amendment is required, I note that the Health and Social Care Act 2008 requires that all CQC-registered health and adult social care providers ensure that their staff receive specific training on learning disability and autism.

Amendment 427 would impose an obligation to take all reasonable steps to ensure that the co-ordinating doctor is proficient in the Welsh language if services or functions under this legislation are to be provided to an individual in Welsh in Wales. The amendment does not make it clear who would be obliged to ensure that those steps were taken, or who would assess and enforce whether the “fluent proficiency” standard was met.

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Amending clause 40 through amendments 170 and 171 would give the Senedd and the Welsh Government the rightful authority to ensure that provisions are ready, adequate and enforceable in the Welsh context before their commencement in Wales—in other words, before the end of the two-year period. I tabled the amendments in an attempt to provide Senedd Cymru—the Welsh Parliament—and Welsh Ministers with their correct and rightful powers in areas that are devolved to Wales. We must be clear on that. That is what I have set out to do: that has always been my stated aim as a member of this Committee. I hope that Committee members will consider these practical amendments and support their inclusion in the Bill.

[Danny Kruger]

I will speak briefly in support of the amendments. The right hon. Member for Dwyfor Meirionnydd may want to intervene to request that the Minister respond to a couple of additional points.

It is very uncomfortable that the Bill ignores the devolution settlement in this way. It is regrettable that it was introduced in its current form in the knowledge that the Senedd in Wales rejected assisted dying a month earlier. That suggests either that originally little thought was given to including Wales in the Bill or that, subsequent to the vote in the Senedd, it was decided that the Bill would be imposed on Wales. It would be helpful to have clarification about the original intent.

I very much echo the points that the right hon. Lady made. She is absolutely right about the appropriateness of giving the Welsh Government powers to manage the Bill’s operation and implementation if it passes. I would suggest a stronger process of implementation, reflecting the advice given by Professor Lewis, who gave evidence to us on Welsh law. In the light of the vote in the Senedd to reject assisted dying, he pointed out:

“The vote was against ‘the principles of assisted dying’, not only about how the NHS in Wales might be affected. It was a decision which the majority of the Senedd made about those principles, having reflected on the…issues raised.”

Professor Lewis proposed a straightforward way of respecting that vote while recognising that, if this Bill passes, it will apply to Wales. He suggests that we should

“provide for different commencement provisions in the Bill. As things stand, under clause 42 of the Bill, most of the Bill will not come into force until the Secretary of State has brought it into force, with the approval of the UK Parliament. Why not provide that the Bill will only come into force in Wales when and if the Welsh Ministers bring it into force with the approval of the Senedd?”

The objection might be made that cross-border issues would be created if Wales does not proceed but England does. Nevertheless, that is a matter that devolution can cope with. It will have to cope with the cross-border issues that will arise if the Scottish Bill does not proceed, and of course we have cross-border issues between Wales and England with respect to organ donation, so I do not accept that the two countries need a uniform policy. I do not know whether the right hon. Lady or the Minister wish to comment on the suggestion that the Bill should commence in Wales only if Ministers bring it forward with the approval of the Senedd.

[Liz Saville Roberts]

The evidence for a commencement date would be associated with an impact assessment in Wales. That is why it is so important that Welsh Ministers have the power to get the information they need and to implement any changes that come forward.

[Danny Kruger]

I absolutely agree with the right hon. Lady. There is a whole set of challenges, including in England, in respect of the impact assessment and the Bill’s commencement. Nevertheless, my suggestion is that we strengthen her proposal to empower Welsh Ministers to proceed. We should respect the devolution settlement and reflect what she describes as the “correct and rightful powers” of the Welsh Parliament to ultimately decide whether this law were to come into effect in Wales.

[Stephen Kinnock]

Amendments 144 to 171, tabled by the right hon. Member for Dwyfor Meirionnydd, relate to the powers and duties vested in the Secretary of State under the Bill. The purpose of the amendments is to change all references throughout the Bill from “Secretary of State” to “appropriate authority”. Amendment 169 defines “appropriate authority” as the Secretary of State in relation to England and as Welsh Ministers in relation to Wales. I note the intent of the promoter of the Bill, my hon. Friend the Member for Spen Valley, that the Bill’s provisions extend and apply to both England and Wales.

The amendments would mean that all the powers and duties vested in the Secretary of State are instead shared between the Secretary of State where they relate to England and Welsh Ministers where they relate to Wales. I would like to put on the record the Government’s continued commitment to devolution and to working with the devolved Governments. Having taken a neutral position on the Bill and the matter of assisted dying, the Government are still committed to working with the Welsh Government to resolve legal and technical issues and discuss constitutional matters that might arise thoughtfully and amicably.

With regard to the phrase “appropriate authority”, the challenge is that in each case throughout the Bill the appropriate authority would be determined by the devolution position of the clause in question—what is the underlying question that the clause seeks to address, and is that a reserved or devolved matter? I have discussed this with parliamentary counsel and others, and the concern is that a blanket provision of this nature may well be premature at this stage. Until we have finalised and determined the constitutional nature and impact of each clause, putting a blanket provision in place may run counter to that process.

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[Danny Kruger]

I beg to move amendment 360, in clause 5, page 3, line 23, at end insert—

“(e) who, If receiving remuneration for the provision of services in connection with the provision of assistance to that person in accordance with this Act, makes publicly available an annual statement setting out total turnover from the provision of services under this Act and the number of patients assisted, and such other information as the Secretary of State may specify by regulations.”

This provides that if the coordinating doctor receives remuneration for providing assisted dying, they must then make a public annual statement about their operation.

[The Chair]

With this it will be convenient to discuss amendment 361, in clause 5, page 3, line 28, at end insert—

“(7) Regulations under subsection (3)(e) are subject to the affirmative procedure.”

This is linked to Amendment 360.

[Danny Kruger]

The amendment speaks to the general confusion we remain in about how the assisted dying law would be implemented and who would operate it. We are in a great cloud of unknowing about whether we are talking about an NHS service or a private service. If there were to be a private service and people were to be paid to deliver it outside the NHS, the amendment would clarify obligations regarding how their remuneration would be recorded.

There is an established precedent for publishing financial interests where there is a potential for a conflict of interest. Senior officials in NHS England, NHS trusts and the Medicines and Healthcare products Regulatory Agency must declare financial interests—including relationships with pharmaceutical companies—in public registers. Those interests include consultancy fees, gifts, hospitality, shareholdings in pharmaceutical companies or research funding, because there is a concern that those influence drug approvals, procurement and healthcare policy and that there is a risk of bias.

NHS England guidance on managing conflicts of interest encourages the detailed disclosure of significant payments from pharmaceutical companies, often with exact figures or ranges for payments above a £500 threshold. The Association of the British Pharmaceutical Industry runs Disclosure UK, which requires pharmaceutical companies to publicly report payments to healthcare professionals and organisations. It would be appropriate to follow this well-established precedent and ensure that people involved in the administration of assisted dying are accountable for the transparency for their remuneration.

Clause 5(3) recognises that there could be a conflict of interest and that there is a risk that someone who is related or might benefit financially may not be a neutral assessor of someone who wishes to die, but clause 40(4), which comes rather late in the Bill—it should be up front—specifies that

“a registered medical practitioner is not to be regarded as benefiting financially or in any other material way from the death of a person by reason only of the practitioner receiving reasonable remuneration for the provision of services”.

Here is where we discover that the Bill does envisage remuneration, but people being remunerated are excluded from the definition of people who financially benefit from the service. To me, that feels dangerous.

Although it has not resolved the question of whether assisted dying is to be an NHS service, the Bill clearly envisages the establishment of a private market for these services, perhaps with a specialist service like Dignitas. Are we content with the Bill’s assertion that remuneration is not a matter for scrutiny? What level of remuneration would we consider reasonable? What level would we consider excessive—remuneration that is capable of influencing a doctor’s thinking? Would they be paid for administering assisted death on a per patient basis, or as a cumulative practice?

As MPs, should we not have some unease at the idea that this could be a highly profitable specialism for private practice? Transparency on what is being charged and who is profiting from the service would help us to understand what is happening in the system that is being established. I suggest that we bring more sunlight into the system, as we do in many other areas.

It is notable that there is little public data on what is charged, or how much revenue assisted dying generates for medical practices, in other countries where assisted dying is a private service. That is regrettable, and I hope we will not replicate that here. We do know that at Dignitas, which is a not-for-profit, the cost for a single patient is between £5,000 and £8,500 in fees alone. What is reasonable remuneration for a practice that provides assisted dying here in the UK? The term is entirely undefined, and I would be grateful for any clarity.

[Kim Leadbeater]

I understand the hon. Gentleman’s keenness to get to the debate on clause 32, on the provision of the service—we will come to that in due course—but this conversation is about the amendment. To be clear, there is no expectation that assisted dying would be set up as a private enterprise or service. It would be delivered within the provision of the NHS.

[Danny Kruger]

I am glad to have that suggestion. Clause 32 is extremely broad. It basically empowers the Secretary of State to set up a service in any way they choose, potentially including in the private sector. The hon. Lady says it is not envisaged that would happen, as she is suggesting this should be an NHS service. I am grateful for the clarity, but I wish it were clearer in the Bill.

[Kim Leadbeater]

It will be.

[Danny Kruger]

I am glad to hear we will have more clarity. Having assisted suicide as an NHS service is fraught with enormous risks, along the lines we have discussed and will no doubt continue to discuss. At least we have that clarity. If the hon. Lady is going to rule out private provision and profit making or remuneration of people outside the NHS, I would be grateful for amendments specifying that. That would help to address this question.

My amendments would mean that if there is private provision of assisted suicide, as the Bill currently allows, the public and Parliament could understand who is being paid what, which I think is very appropriate.

[Jack Abbott]

To give the Committee a sense of clarity, is the hon. Gentleman saying he wants the finances to be in the public domain, so that if provision were to go down a private route, everyone would know what an individual is charging for these services? Or is he suggesting a cap on services? What is the intention of his amendments?

[Danny Kruger]

My amendments state that if a medical professional is paid for delivering assisted suicide, the money they receive should be transparent. The answer is therefore the former.

I do not propose any cap. If we end up with a private service, although the hon. Member for Spen Valley has just told us that we will not, it might be appropriate to create a scale of charges. My suggestion is that we need absolute clarity. I also think we should use the affirmative procedure to approve the regulations on the transparency of finances. This should be something that Parliament expressly approves.

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

My interpretation of what the hon. Member for Spen Valley said is that, as long as the service is available on the NHS, it is up to me whether I go private. In such circumstances, I could have it on the NHS if I really wanted. If I chose to go private, as I might if I were having a baby at the Portland hospital or cosmetic surgery at King Edward VII’s hospital in Marylebone, why would my hon. Friend the Member for East Wiltshire want to know the private arrangement between me and my physician?

[Danny Kruger]

I am grateful for that clarity, although we now seem to be less clear than we were. I understood the hon. Member for Spen Valley to be saying that there will not be private provision, but my right hon. Friend is saying that there may be.

[Kim Leadbeater]

Will the hon. Gentleman give way?

[Danny Kruger]

It would be helpful if the hon. Lady clarified whether private provision will be allowed under the Bill, because I think we have a party split. My right hon. Friend the Member for North West Hampshire supports private provision, but the hon. Lady suggests this should be done only on the NHS.

[Kim Leadbeater]

This service, like many others, will be delivered through a range of providers, as alluded to by the right hon. Member for North West Hampshire. I understand the keenness to have this debate now, but we will come on to it further down the line. The hon. Member for East Wiltshire is right that this is really important.

[Danny Kruger]

It certainly is. Okay, so it could be either. This will be an NHS service, with all the implications for general practice, doctor-patient relations and secondary care and social care, but there will also be an opportunity to deliver it privately, without any clarity or transparency on who is being paid and how.

In answer to my right hon. Friend the Member for North West Hampshire, this is different from cosmetic surgery, as even cosmetic surgery is regulated. In many ways, there is more regulation of the administering of Botox than there is in this Bill. The administering of assisted dying is of a significantly different category and gravity. It is appropriate and important that financial interests are clearly revealed and made public, particularly with the new intervention we are creating. If other hon. Members do not support the amendment, what provisions do they propose that would reveal where there may be potential conflicts of interest and how we may regulate this?

[Dr Simon Opher (Stroud) (Lab)]

I thank the hon. Member for East Wiltshire for the amendment. The set-up of this scheme is similar to other NHS services. Essentially, a medical professional will opt in to provide the service. That will involve extensive training followed by a short exam, as it does in Australia and California, after which they will be accredited under the scheme—that is how I understand it will happen in the UK. No one is forced to provide the service, but training is offered and many doctors take that up. Therefore, it is a medically based service.

The British Medical Association will then negotiate the fee for doing the assessment with the Department of Health and Social Care. That is not about agreeing to provide the service; it is about doing the assessment. That is mirrored in many aspects of general practice, which itself is a private service contracted to the NHS. It is very complicated. It would be inaccurate to portray this as a private service, where people may profiteer, as it is based on medical professionals performing a duty for which they are trained and for which the price is clear to the general public, because it is negotiated and published.

On publishing the number of patients seen by a single doctor and the fees that doctor has accrued from the scheme, that is not something that happens for things like minor operations, which we perform outside general medical services, although we are rewarded by the Government at a set fee. There are other such services—inserting a coil, for example—where we are given a certain amount of money.

How this is arranged is very complicated. Doing appraisals, being a trainer and all these things have a price attached, and we need training before we can perform the service. I see this scheme as no different. The problem with publishing how many patients have been seen by a single doctor regarding assisted dying is that it puts a target on that doctor. As we have seen with abortion clinics and even this Committee—certain Committee members have been targeted by the press for what they have said—this is a very sensitive issue, and it would not be fair to publish the figures so that doctors could be targeted in the press and made to feel unworthy in all those ways. It is extremely difficult.

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[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.

[Danny Kruger]

I am grateful to the Minister for raising a number of points, including the extraordinary revelation that we are about to find out how the Bill will operate in practice, with amendments yet to be developed even though we have been debating the Bill for a couple of weeks.

The difference between the tariff and a doctor’s income is fine, but if the tariff is to be clearly specified—no doubt it will be—how could it be complicated to determine how many tariffs a particular practice has received? I recognise that there is a separate question about whether it is appropriate to reveal that, but why is it difficult to identify how many individual tariffs a particular practice has received?

The Minister has described the tariff income, but my other concern is about the sponsorship, gifts, hospitality and fees of all sorts that the pharmaceutical companies are always trying to administer. Will he address the question of whether that should be transparent as well?

[Stephen Kinnock]

The challenge in the hon. Gentleman’s amendment is the term “total turnover.” A GP would have to extrapolate from the service provided to a whole range of other costs that may apply—for example, the share of the overhead they pay into their primary care network, the share of admin costs or the rent on their building. The definition of total turnover is the entire cost and entire revenue from the tariffs. As officials have made clear, this additional level of complexity would be an onerous task, although not necessarily impossible.

Total turnover is one side of this issue; the other, much more salient point is the quantum leap between having transparency on a particular tariff and pointing at a specific doctor and saying, “You over there—you did this much work on that much tariff, and that’s how much money you made for it.” There is a big difference between the two.

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

Danny Kruger Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Kim Leadbeater (Spen Valley) (Lab)]

I have nothing further to add in this debate.

[Danny Kruger (East Wiltshire) (Con)]

In the light of the suggestion from the hon. Member for Spen Valley that there will be further amendments later, when we can discuss the shape of the provision and presumably any remuneration, I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 186, in clause 5, page 3, line 23, at end insert—

“(3A) The Secretary of State must by regulations make provision about the training, qualifications and experience that a registered medical practitioner must have in order to act as the coordinating doctor.

(3B) The regulations must include training about—

(a) assessing capacity;

(b) assessing whether a person has been coerced or pressured by any other person.

(3C) Subject to that, the regulations may in particular provide that the required training, qualifications or experience is to be determined by a person specified in the regulations.”—(Kim Leadbeater.)

See the statement for Amendment 185.

Amendment made to amendment 186: (a), after

“(b) assessing whether a person has been coerced or pressured by any other person.”

insert

“(c) specific and up-to-date training on reasonable adjustments and safeguards for autistic people and people with a learning disability.”—(Daniel Francis.)

Amendment 186, as amended, agreed to.

[Kim Leadbeater]

I beg to move amendment 187, in clause 5, page 3, line 24, leave out subsection (4).

This amendment is consequential on NC8, which contains a single duty to consult before making regulations under various provisions of the Bill.

[Kim Leadbeater]

This group of amendments is consequential on new clause 8, which would create a single duty for the Secretary of State to consult before making regulations under various provisions of the Bill. It would consolidate the previous requirements to consult in relation to clauses 5, 8 and 19 and expand the duty to cover additional clauses. It would require the Secretary of State to consult the Equality and Human Rights Commission and such other persons as the Secretary of State considers appropriate. The persons to be consulted under subsection (1)(b) must include persons appearing to the Secretary of State to have expertise in matters relating to whether persons have capacity, and persons appearing to the Secretary of State to have expertise in matters relating to whether persons have been coerced.

This is an important strengthening of the Bill. It applies to multiple clauses: clauses 5, 7, 8, 13, 19 and 21. The duty to consult experts, particularly on issues around capacity and assessing for coercion, is an important change that reflects the detailed debate that the Committee has undertaken on those two important issues.

Amendment 233 brings together the various provisions about the procedure for regulations. It would make the regulations to be made under clauses 5 and 8, on training, qualifications and experience, subject to the draft affirmative procedure, so that Parliament has to debate and approve them first. Again, that would strengthen the Bill.

[Danny Kruger]

In a sense, this is a technical set of amendments that consolidate the provisions for secondary legislation. However, it reflects the seriousness of a concern that I and others have raised, which is that so much in this Bill will be left to the discretion of Ministers, often through the negative procedure.

It is important to reflect briefly on the questions that we are considering. The hon. Lady has mentioned quite a few of them, but we are talking about the training of doctors; the High Court procedure, if there is one; the substances that may be used in the administration of assisted death; the prescribing of those substances; the registration of deaths; the codes of practice to be introduced; provision through the NHS; notification to the chief medical officers; changing the schedules in the Bill, and so on.

Those are important matters. I recognise that many of them are complicated and technical, and that it is appropriate to leave them to a degree of professional and ministerial discretion. Nevertheless, my great concern, which relates to the parliamentary procedure—you may have a view on this, Mrs Harris—is that we are having this debate without the benefit of a delegated powers memorandum to explain why each power has been taken, the nature of it, the reason for taking the power and the procedure to be selected.

In a recent report on the Bill, the Hansard Society notes that under the Government’s “Guide To Making Legislation”, a delegated powers memorandum would normally be published prior to Second Reading for a private Member’s Bill on issues of conscience on which the Government are neutral. The report explains that a delegated powers memorandum gives

“details of each power in the bill, including its context, its scope, to whom the power is delegated, and the parliamentary scrutiny procedure…the reasons for taking the power; and…why.”

It points out that

“where the responsible department recommends that the Government should support the Private Member’s Bill or remain neutral then a DPM should be produced for consideration by the relevant Cabinet Committee—the Parliamentary Business and Legislation (PBL) Committee—alongside other key documents such as the explanatory notes, a legal issues memorandum, and an impact assessment”.

We have not yet had an impact assessment either.

[The Chair]

Order. I ask the hon. Member to speak to the amendments. You have gone out of scope.

[Danny Kruger]

I am sorry about that. I am trying to make the point that the amendments would all grant a large number of powers to Ministers through the statutory instrument procedure. That is why I am referring to the Hansard Society report.

[The Chair]

Please stick to the amendments.

[Danny Kruger]

I understand, but it would be interesting to know whether the Government have produced a delegated powers memorandum, and when it will be published.

I have four quick points to make about my concerns about the amendments and new clause 8. First, new clause 8 provides that when making the SIs, the Secretary of State must consult the Equality and Human Rights Commission. That is a very positive step, but the other provisions on who should be consulted are, on closer inspection, illusory. The Secretary of State must consult those with expertise on capacity and coercion—that is all great—unless he or she considers that

“it would not be appropriate”.

What the new clause gives with one hand, it takes with the other. It would be good to identify in the Bill who the groups are that the Secretary of State must consult for each power.

Secondly, the vast majority of the SIs made under the Bill, as amended by the amendments, are to be made by the negative procedure. The last time that an SI subject to the negative procedure was annulled by the House of Commons was 1979. The procedure gives only the outward appearance of involving Parliament again. The SIs take effect when signed by the Minister, subject only to a motion of either House to annul them. However, by strong convention the Lords will do no such thing, and the convention in the Commons is that the Government will make time to debate such a motion only if it is put forward by the Opposition Front Bench, and it is at the Government’s discretion.

This being a matter of conscience, it is unlikely that any Opposition Front Bench would be in a position to table such a motion, and no one else has any standing. In practice, that means that there will be no opportunity for parliamentary scrutiny on, which lethal substances may be approved, for example, or on what events should be notified to the chief medical officer. These are not mere details.

Thirdly, on some of the matters addressed in the amendments it is doubtful whether the use of delegated powers is even appropriate, because even if there is a debate and a vote in Parliament, debate on an SI is limited to 90 minutes only and an SI is not amendable. In fact, the House of Lords Delegated Powers and Regulatory Reform Committee considered it improper that the Assisted Dying Bill introduced by Baroness Meacher gave the power to the Secretary of State to decide which substances should be allowed to cause death, because it was an inappropriate question for an SI.

Finally, and perhaps most substantially, clause 32 will establish a vast Henry VIII power. It allows Ministers even to amend primary legislation, and those changes would be subject to a simple yes or no vote in the Commons, without the possibility of amendment. It has been suggested in the Hansard Society podcast with the drafter of the Bill that the power is there because provision on the NHS could be made only if section 1 of the National Health Service Act were modified, removing the duty of the Secretary of State to improve the “physical and mental health” of the public. I look forward to seeing whether the amendments that have been promised include that. However, they will not necessarily amend the National Health Service Act, because that could be done under the statutory instruments created in these amendments.

If such a foundational piece of legislation as the National Health Service Act needs to be modified to allow this law to pass, surely it would be better to do it on the face of the Bill. I want to know why a Henry VIII power is needed. I hope that the Government might bring forward the relevant amendments to the Bill so that a Henry VIII power is not needed. I see that the hon. Member for Spen Valley is nodding, which is encouraging.

I stress that the Committee must bear it in mind that this power would exist on the statute book forever, unless the statute is repealed, so any Government could use this power. The last time that a Parliament found its voice to reject an SI by the negative procedure was back in the 1970s. When we come to a decision on amendment 233 and new clause 8, I will seek to make further amendments.

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

It is a pleasure to serve under your chairship, Mrs Harris. It would be remiss of me not to comment briefly on new clause 8, given that throughout this process I have consistently raised issues around evidence given by the Equality and Human Rights Commission, and given that new clause 8 states that before making a recommendation the Secretary of State must consult the commission.

I remind hon. Members that the commission has told us that it strongly recommends that

“at the earliest opportunity, Parliament is provided with further information and assurance about the bill’s compatibility with equality and human rights.”

It went on to say that its concerns were that the Bill

“may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability.”

It has also stated:

“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity…It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005.”

I welcome new clause 8, which is in the name of my hon. Friend the Member for Spen Valley, as it would ensure that the Equality and Human Rights Commission is consulted. We await its comments, which hopefully we will have before Report, on whether the concerns that it raised, both in writing before Second Reading and in their oral evidence, have been allayed. However, I welcome this initial commitment, and we will see where that brings us on Report.

--- Later in debate ---

[Naz Shah (Bradford West) (Lab)]

I rise to speak to amendments 291, 292 and 293, which were tabled by my hon. Friend the Member for York Central (Rachael Maskell). I do not intend to press them to a vote; they are probing amendments. They all relate to the amendments tabled by my hon. Friend the Member for Spen Valley about the identification required of applicants for assisted dying. They do not change those requirements; they take a more logical and businesslike approach to proving that those requirements are met.

Amendment 291 would change the current requirements on identification and require applicants for assisted dying to produce a piece of photo ID and proof of residence in the UK for the previous year. As currently written, clause 6(2) states:

“The person must, at the same time as that declaration is made, provide two forms of proof of identity to the coordinating doctor and the witness mentioned in section 5(2)(c)(ii).”

Subsection (3) states:

“The Secretary of State may, by regulations, make provision about the forms of proof of identity that are acceptable for the purposes of subsection (2).”

Surely that is not tight enough.

In particular, the Bill as written does not specify that either form of proof of identity should be photo ID. That may be a major omission. For much less significant decisions, the law of England and Wales requires at least one form of photographic ID. For example, there is currently a requirement to have photo identity to work on the parliamentary estate, vote, or have a bus pass or railcard. None of those is as important as applying for an assisted death.

I remind hon. Members that assisted death is a process that would end in a person being issued with and then taking a mixture of lethal drugs. In a hospital setting where drugs are dispensed, rigorous processes are undertaken to verify the patient. Drug errors are not uncommon. The previous Health and Social Care Committee’s report into pharmacy witnessed how clinical practice was being improved to reduce drug errors. Given that a lethal dose is dispensed as part of this process, the identification mechanisms are weak and should be addressed in this preliminary stage through the provisions set out in this amendment. It is possible that the wrong person could be prescribed the medication. That would be an extreme case, but we are talking about creating a wholly new power that would relate to life and death. We are talking about making assisted dying available to people who are, in many cases, extremely distressed. People in extreme circumstances will sometimes do extreme things. We should expect some extreme cases and seek to guard against them.

Amendment 291 would provide such a safeguard. The Bill says that to qualify for assisted dying, applicants must have been resident in the UK for at least a year, but it does not ask them to provide any proof of that residence. In such a serious matter, we surely cannot simply accept someone’s word that they live in the UK. Making that a requirement without a test to establish it de-values the importance of the criteria for qualifying.

Amendment 292 would change clause 6(3), which currently reads,

“The Secretary of State may, by regulations, make provision about the forms of proof of identity that are acceptable for the purposes of subsection (2).”

The amendment would change that “may” to a “must”, as the former treats the identification process with reduced seriousness. If the word “may” stays in legislation, there is no obligation to have rigour in the identification process. As drafted, the Bill is more open for abuse.

Amendment 293 seeks to place the regulations concerning identification under the affirmative procedure, which the hon. Member for East Wiltshire mentioned earlier. Assisted dying is so important that no regulations made under it should be drawn using the negative procedure. As Members will know, if a statutory instrument is made under the affirmative procedure, it must be approved by Parliament within a certain timeframe, which is usually 28 or 40 days. If that does not happen, the change to the law made by the statutory instrument will not take place. In the Bill as drafted, these regulations are covered by the negative procedure, which means that if and when the Secretary of State decides to change them, they could go through on the nod unless Members raised an objection. A statutory instrument laid through the negative procedure becomes law on the day the Minister signs it and automatically remains law unless a motion rejecting it is passed by either House within 40 sitting days.

Placing all changes to regulations under the affirmative procedure would ensure that we have scrutiny by Parliament. We should all approve this. Our responsibility for this legislation will not end when and if it becomes an Act of Parliament. These amendments speak to tighter safeguards and parliamentary scrutiny for all new regulations made by the Secretary of State in relation to identity and residence. All hon. Members should support them.

[Danny Kruger]

I will quickly echo the points well made by the hon. Member for Bradford West in support of the amendments in the name of the hon. Member for York Central. It is important to specify the form of identity that will be presented. The person presenting themselves for an assisted death needs to be who they say they are. At the moment, the power to specify the forms of proof of identity has no minimum requirements. As written, it does not require the Secretary of State to specify what is acceptable.

Two specific aspects we have to pay particular care to are age and residency. The process must be accessible only to over-18s. I am concerned that we rejected amendments yesterday that would have prevented people under 18 having the conversation. In light of that, it is even more important that we make it clear that people who access assisted death must be adults. We need to ensure that the forms of identity are specified and that Parliament can satisfy itself that they are robust.

[Kim Leadbeater]

We did not reject proposals for the preliminary discussion not to be taken by people under 18. We actually put a clause into the Bill that would ensure that the preliminary discussion was not taken with someone under 18.

[Danny Kruger]

That is right. The preliminary discussion will not, but there is nothing to stop the conversation beginning before the person is 18. I know they cannot formally begin the process of an assisted death, but the concern—although I will not revisit the debate—was that the topic should not be raised or discussed with children, and we did not succeed in that.

The proposal is to ensure that we have proper ID—a passport, driving licence or other combined photo ID and proof of age, so a birth certificate must be paired with something if it is to be robust. We think such questions should be reflected more clearly in the Bill. All sorts of ID would not be appropriate, such as student ID, a sworn statement with no underpinning official record and other such things, which we want to avoid.

--- Later in debate ---

[Jake Richards (Rother Valley) (Lab)]

I was expecting someone else to have spoken in support of amendment 296, but I will be very brief. The tone of the debate so far has been respectful, and it should continue to be so. I hope that this will not be characterised as a personal attack on my hon. Friend the Member for York Central, who tabled the amendment, or anyone else who supports it, but this is a shocking amendment. It is shocking because I doubt that the motives behind it are to improve the Bill or make it safer. In fact, I fear that the motives are to build a political attack to support opposition to the Bill, rather than to be constructive in improving it.

I have come to that conclusion because there is no concept in any other piece of legislation, or in any healthcare guidance in operation, that would ever presuppose that a clinician would undertake a consultation, assessment or meeting that would ever put other patients in danger. I fear that this amendment has been tabled because some people are attempting to assert, perhaps not purposefully or wilfully, that the introduction of an assisted dying system would somehow force clinicians to put other patients at risk. If that is the assertion, that is wrong and—in my view—shocking. It is a shocking indictment on their view of our medical practitioners in the NHS.

[Danny Kruger]

The hon. Gentleman is impugning the motivation of his colleague, the hon. Member for York Central, who is herself an experienced practitioner in the NHS. To suggest that she has tabled this amendment improperly is a serious accusation, which I cannot believe that he really wants to make against his colleague. He said that the amendment’s intention is to suggest that assisted dying would cause problems in the NHS, but the explicit terms of the amendment are to ensure that that does not happen. Of course, no practitioner would want to take choices that would prejudice other patients’ care.

[The Chair]

Order. Mr Kruger, you are down to speak and you can make your point then. I want interventions to be short.

--- Later in debate ---

[The Chair]

I call Danny Kruger.

[Danny Kruger]

I was not intending to speak on this amendment, but since you have called me, Mrs Harris, I will quickly respond to the comments of the hon. Member for Rother Valley. I sincerely think that he should withdraw the suggestion that the amendment was made in bad faith and his remarks about the motivation of the hon. Member for York Central. She clearly tabled it only to make the Bill safer, which is the purpose of all the amendments, even if there might be very good reasons to disagree with them, so I regret that attack on her integrity.

On the point that we should simply rely on the integrity of clinicians—although the hon. Member for Rother Valley has not done so in respect of the hon. Member for York Central, who is herself a clinician—of course we do that. Nevertheless, the laws we make and the guidance we introduce send strong signals about priorities. The purpose of the amendment is to ensure that doctors do not feel that the obligations created by the Bill impose a duty on them to prioritise the assisted death procedure over other priorities. In fact, it would give clinicians genuine autonomy and freedom to make their own decisions—obviously, in consultation with colleagues and patients—about the appropriate prioritisation of the treatments and services they are offering.

The hon. Member for Rother Valley made the point that there is, in a sense, an attempt to suggest that the Bill should not become law because of the pressures it could impose on the NHS. I think that such pressures are a valid concern. When we create new laws, we should consider what new burdens they will place on existing services. We should consider whether the new service will be introduced and implemented safely, and its knock-on implications for the wider system.

[Jake Richards]

The point is that the amendment is not about the wider system; it is about a clinician’s individual decision making. Does the hon. Gentleman agree that that is a very different prospect?

[Danny Kruger]

Well, that concern for the individual clinician is in the context of their wider obligation to treat their patients well and to manage a resource—their own time—in a way that is equitable to all the patients they have to see. As often in these debates, we are really considering the extent to which we should be putting into the Bill an obligation on doctors to do the job that we hope that they are doing anyway. We do have such rules in the system to clarify what we expect of clinicians, however, and I think they would be appropriate in this case, given the resource requirements—which are unknowable, but with common sense one can see that they will be quite significant—that this new service would entail for many clinicians in the NHS.

[Jake Richards]

If the Government were to introduce legislation to expand the NHS’s role in how it undertakes operations in a certain area, would the hon. Member suggest that similar amendments should be added to that legislation, or it is just about this issue?

[Danny Kruger]

There is no rule that can be applied universally in the abstract. All rules take their value from how they are introduced. On the hon. Gentleman’s hypothesis, I do not in principle suggest that every new treatment and every new obligation that is created in the NHS should require laws determining how clinicians prioritise them. In the case of a new service—I am trying not to use the word “treatment”, because I do not accept it as such, but it sounds like it will be treated as an NHS treatment—that is very significant and whose resource implications are unknown, it strikes me as appropriate that, as far as possible, we should be clear that doctors should manage the resource demands placed on them by the Bill in the context of their other obligations to patients.

[Kit Malthouse]

Can my hon. Friend not see that, as the hon. Member for Rother Valley said, the amendment is based on what could be construed as an offensive assumption: that doctors otherwise might or would? Effectively, it is the legislative equivalent of the “When did you stop beating your wife?” question.

--- Later in debate ---

[Danny Kruger]

I am afraid to say that we do impose obligations on doctors to do the things that we expect them to do. If that is offensive to doctors, so is all the guidance from the General Medical Council. It might well be argued that the amendment is otiose, because of course we would expect doctors to manage their resource requirements appropriately and to consider other patients. Nevertheless, the point that is being made in defence of the amendment, about which I feel strongly, is that we are creating a new service with unknowable resource implications, with strong parliamentary backing behind it, and with a whole set of guidance that will be created ex nihilo by the Secretary of State and that Parliament will have little control over.

Because we have not seen the amendments on the design of the service, we do not even know what the service will involve and how much work it will take. It is therefore appropriate to specify explicitly that doctors have an obligation to consider the potential impact on other patients.

[Kit Malthouse]

I understand where my hon. Friend is coming from. To give us fair warning, if the Committee votes the amendment down, how will he portray that publicly? Will he say to the public that the Committee has voted for doctors to harm other patients?

[The Chair]

Order. That is not a relevant question, Mr Malthouse.

[Danny Kruger]

I am grateful for your ruling, Mrs Harris, but I hope you will not mind if I do respond to the question.

[The Chair]

Order. I do mind.

[Danny Kruger]

Okay. I might address the question at a future point, because the issue of how we reflect on these proceedings outside this place has come up privately.

[Kim Leadbeater]

I do not consider for one second that there is any ill intent behind the amendment, but I am slightly concerned about the language, which is what I think my hon. Friend the Member for Rother Valley meant. The issue is the suggestion that a doctor would, in any circumstances, jeopardise the care of other patients. We are talking about doctors a lot, and we have the utmost respect for medical practitioners, but I imagine that that would be a worrying concept to have in writing from their perspective.

[Danny Kruger]

I respect that point, and it is a fair charge: that doctors would not do this. Nevertheless, as I have been stressing, we are in uncharted territory, and there is a genuine concern about the resource implications of the Bill.

The Bill clarifies and emphasises things in lots of other places—“for the avoidance of doubt” and so on—and the amendment would clarify that the procedure under the Bill would not take precedence in a clinician’s time over other matters that they also consider to be pressing and urgent. That is an appropriate safeguard for doctors.

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

The problem with the amendment, which has been mentioned before—I will not go as far as my hon. Friend the Member for Rother Valley and say that it would essentially nullify the Bill—is that it is entirely subjective. It is not guidance or a clear point of reference; it is entirely subjective to each individual doctor.

[Danny Kruger]

I am afraid that the English language is rather subjective. The service would rely on guidance or case law that had been built up, although one hopes that there would not have to be court cases in respect of it. The interpretation of the language of the Bill would be the duty of clinicians and, ultimately, NHS trusts and their lawyers.

[Jack Abbott]

A lot of the conversations we have had in Committee have been about eliminating the lottery that exists in our healthcare system. What the hon. Gentleman is suggesting will be exactly that: a lottery according to each individual clinician and doctor.

[Danny Kruger]

We cannot have it both ways. We cannot give doctors and clinicians autonomy, which the Committee has repeatedly seen as a ground to reject all sorts of obligations that I and others have proposed to ensure that doctors do the job in a specific way, and then suggest the opposite in this instance. I recognise what the hon. Gentleman says, and he may be right that that is inappropriate.

[Naz Shah]

Does the hon. Member agree that perhaps the amendment is not just about the context in which it has been referred to so far, but about protecting doctors in future? When mistakes happen, people would have a means to protect themselves.

[Danny Kruger]

The hon. Lady is absolutely right. We should not forget that doctors are indemnified against any civil claims under the Bill. Nevertheless, they will want to protect themselves against the accusation that they inappropriately prioritised one case over another. That is the purpose of the amendment, and I urge the Committee to support it.

I will finish with this point. I am ashamed to say it, because my party was responsible for the NHS for the 14 years until last year, but the fact is, as Labour Members said frequently when they were in opposition, that there are enormous resource constraints on the frontline in the NHS. I do not think that is inappropriate to consider, when we create a new service, how it might have an impact on existing treatments in the NHS. Leaving aside all the ethical questions, including on coercion and capacity and our concerns in that respect, what will this mean for hard-pressed GPs and clinicians of all sorts on the frontline? What protections can we offer them when they make difficult decisions about whether to support an assisted death application?

--- Later in debate ---

[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.

--- Later in debate ---

[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.

[Danny Kruger]

I appreciate the point that the hon. Gentleman is making, and that he will not be able to support the amendment, but does he acknowledge that its purpose is to clarify the triage process that needs to be done by doctors? It is a perfectly appropriate request to make of doctors.

[Sojan Joseph]

I agree. It highlights the point that the impact assessment will be very important here, to see from where the resources are being pulled to provide this. The Committee should acknowledge amendment 296.

--- Later in debate ---

I have been a doctor for 37 years, and have never known a psychiatrist involved in palliative or terminal care. I have never come across that as a concept. I am not saying that that is not a good idea, but it is not common that psychiatrists get involved, because the primary doctors often treat the mental health issues. For example, I have treated depression many times in people with a palliative or terminal diagnosis, because I recognised that they were depressed on top of that diagnosis. It is only in areas where we have doubt that we should be using a specialist service such as psychiatry to give us a reasonable opinion of that.

[Danny Kruger]

I appreciate the hon. Member’s point, and it is very logical that it should only be in the case of doubt, but does he not recognise that in the case of organ donation, it is mandatory? If people have this proper assessment when they are giving an organ, why should they not be asked to have one if they propose to give their life?

[Dr Opher]

That is an interesting point, but we are not discussing organ donation, and we are dealing in a different environment here; the patients we are talking about are about to die, and all we are giving them is the right to control the moment and manner of that death. I acknowledge that using a psychiatrist in organ donation has its benefits, but in this service, getting every patient—who, for example, are frail and ill by definition, because they are about to die—to see a psychiatrist is frankly neither applicable nor appropriate.

[Dr Opher]

I think it would create a barrier. We need to make sure that we deliver legislation that does what we are trying to do, which is to enable someone with a terminal illness, who has full capacity, to make a decision about the end of their life.

[Danny Kruger]

It is a very important point. Yes, we are talking about those people, but we are also talking about a different category of people who have a terminal diagnosis of six months or more, and may only be reasonably expected to die within six months. I am not just talking about people at the very end of their life, who are at death’s door; we are talking about people who qualify for the Bill, which is a much larger category of people, so it is appropriate to require them to do this.

[Dr Opher]

I agree with all of this. I think psychological assessment is incredibly important in all patients, and I personally specialise in it from a primary care basis. But we are suggesting here that the two other doctors have no ability to do any sort of psychological assessment, and that is simply not true.

--- Later in debate ---

[Lewis Atkinson]

Thank you, Mrs Harris—you really are giving the Minister some exercise during these long sittings.

Amendment 14 likens assisted dying to organ donation. I understand that an organ donor, before the point of independent assessment, has had no other independent assessment, which is in stark contrast to this Bill. The idea that, by failing to support this amendment, we are somehow adopting a weaker framework than for organ donation is patently false.

As the Bill sets out, there are already at least two assessments by independent doctors. As per the amendments we have already agreed, those doctors must have training, as specified by the Secretary of State, on the assessment of capacity and coercion. The rationale behind this amendment is already met, and it is significantly more strenuous than the framework for independent assessment in the event of organ donation.

[Danny Kruger]

I am not sure that is right. The amendment insists that this referral and assessment should happen at the earliest stage possible, in the same way as for organ donation. One of the confusions of the Bill is that multiple different conversations could happen. The purpose is to ensure that this conversation with a psychologist or social worker, as per organ donation, happens at the very earliest opportunity.

[Lewis Atkinson]

I disagree with the hon. Gentleman’s reading. The amendment talks about the co-ordinating doctor, as in the first independent assessor, and that is the case in the provisions we have already adopted. Clearly, the co-ordinating doctor may consult—and must consult, as per the amendment we are about to get to—psychiatric or other expertise, if there is any doubt in their mind. Amendment 14 would not bring forward that assessment earlier than elsewhere. I urge hon. Members to bear in mind that the idea that this proposal is somehow weaker than the current human tissue regulations is absolutely false.

On the point made by my hon. Friend the Member for Bradford West, the amendment does nothing to address coercion by a medical professional who knew the person beforehand. Under the amendment, it is by definition an independent person who has no prior relationship with the person.

--- Later in debate ---

[Danny Kruger]

I am afraid that that is a risk in our own country too. Does the hon. Lady acknowledge that some young women have been put on palliative care pathways in the NHS? They have been diagnosed as having terminal anorexia.

[Sarah Olney]

The hon. Member is absolutely right. The Court of Protection has described eating disorders using language typically reserved for terminal illnesses. It has described an eating disorder as being in “the terminal stage”, talked of “all treatment options” having “been exhausted” and used words such as “incurable”. It is immensely regrettable, but nevertheless the case—even though eating disorders are always treatable—that if a person suffering from an eating disorder is deemed to have capacity and is refusing treatment, there may well be nothing that can be done to stop them choosing that path, which may ultimately lead to their death.

--- Later in debate ---

Division 36

Question accordingly negatived.

Ayes: 3

---

Conservative: 2
Liberal Democrat: 1

Noes: 18

---

Labour: 14
Conservative: 2
Liberal Democrat: 1
Plaid Cymru: 1

[Danny Kruger]

I beg to move amendment 257, in clause 7, page 4, line 15, at end insert—

“and that there is no real risk that the criteria in paragraphs (a) to (g) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 258, in clause 8, page 4, line 38, at end insert—

“and that there is no real risk that the criteria in paragraphs (a) to (e) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

Amendment 259, in clause 12, page 8, line 14, at end insert—

“and that there is no real risk that the criteria in paragraphs (b) to (h) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

Amendment 260, in clause 13, page 9, line 34, at end insert—

“and that there is no real risk that the criteria in paragraphs (a) to (d) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

Amendment 261, in clause 18, page 12, line 26, at end insert—

“and that there is no real risk that the criteria in paragraphs (a) to (c) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

Amendment 262, in schedule 2, page 27, line 12, at end insert—

“and that there is no real risk that the criteria in paragraphs (a) and (b) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

Amendment 263, in schedule 3, page 28, line 10, at end insert—

“and that there is no real risk that the criteria in paragraphs (a) and (b) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

Amendment 264, in schedule 5, page 30, line 22, at end insert—

“and that there is no real risk that the criteria in paragraphs (a) to (c) have not been met.”

This amendment provides that the request for assisted dying will not go ahead if there is a real risk that the eligibility criteria are not met.

[Danny Kruger]

I was going to speak briefly to amendment 420(a), as per your ruling earlier, Mrs Harris.

[The Chair]

You can move it, but it cannot be debated.

[Danny Kruger]

I had misunderstood you; that is a shame. I have moved the amendment in the name of my hon. Friend the Member for West Worcestershire (Dame Harriett Baldwin), but I will not speak to it.

[The Chair]

Do you wish to speak to the amendment?

[Danny Kruger]

I do not, but other colleagues will, I am sure.

[Rebecca Paul]

rose—

--- Later in debate ---

[Kim Leadbeater]

I have nothing to add, Mrs Harris.

[Danny Kruger]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 14, in clause 7, page 4, line 15, at end insert—

“(2A) The coordinating doctor must take the report required under subsection (2B) into account in making an assessment under paragraph (2)(b), (f) and (g).

(2B) One or more qualified persons must have conducted a separate interview with the person and made a report to the coordinating doctor on the matters specified in subsection (2C).

(2C) The matters that must be covered in the report required under subsection (2B) are—

(a) any evidence of duress or coercion affecting the person’s decision to end their life,

(b) any difficulties of communication with the person interviewed and an explanation of how those difficulties were overcome, and

(c) the capacity of the person interviewed to understand the information given to them under paragraph (9)(2), (b), (c) and (d).

(2D) A person shall be taken to be qualified to conduct an interview under subsection (2B) if that person—

(a) is a registered medical practitioner who—

(i) is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council, or

(ii) has such training, qualifications and experience as the Secretary of State may by regulations specify,

(b) has not provided treatment or care for the person being assessed in relation to that person’s terminal illness,

(c) is not a relative of the person being assessed,

(d) is not a partner or colleague in the same practice or clinical team as the coordinating doctor,

(e) did not witness the first declaration made by the person being assessed, and

(f) does not know or believe that they—

(i) are a beneficiary under a will of the person, or

(ii) may otherwise benefit financially or in any other material way from the death of the person.

(2E) Before making regulations under subsection (2D)(a), the Secretary of State must consult such persons as they consider appropriate.

(2F) Regulations under subsection (2D)(a) are subject to the negative procedure.”—(Daniel Francis.)

This amendment, and its consequential and linked amendments (15, 16, 17, 18 and 19), would provide for an independent assessment, via an interview conducted by a specialist, of a person’s capacity to make the decision to end their own life, their clear, settled and informed wish to do so, and that they have made the first declaration voluntarily and without coercion.

Question put, That the amendment be made.

--- Later in debate ---

[Danny Kruger]

On a point of order, Mrs Harris. I defer to you, but my understanding is that amendments 346 and 348 and new clause 11, which are in group 6, have not fallen yet.

[The Chair]

They have fallen. If we are all satisfied, can we make progress?

[Danny Kruger]

You’re the boss.

[The Chair]

I was beginning to wonder, Mr Kruger.

Clause 7, as amended, ordered to stand part of the Bill.

Clause 8

Second doctor’s assessment (independent doctor)

[Danny Kruger]

I rise to speak to amendment 55, in clause 71, page 4, line 33, leave out paragraph (a).

The amendment would ensure that the independent doctor has qualifications and experience in psychiatry or in assessing mental capacity. We have heard a lot in the debate about the importance of a holistic, multi-disciplinary approach to patient care at the end of life. We have also discussed the need for that to happen throughout the process and, in particular, during the crucial stages of the patient’s assessment. In the oral evidence sessions, we heard from Dr Rachel Clarke about the need for teams to be involved with patients throughout the process. By requiring the input of a psychiatrically trained clinician in the assessment by the doctors, we would be making explicit the expectation that assisted dying should adhere to the best practice, which we already see in end of life care in our country. We would also be bringing our practice into line with jurisdictions such as Oregon, which require referral to a psychiatrist, as has been discussed.

[Kit Malthouse]

On a point of order, Mrs Harris. I do not think that the amendment is actually about qualifications or training. It is about the removal of certain assessments.

[Danny Kruger]

My right hon. Friend is absolutely right, I apologise. I am speaking to later amendments, so I apologise to the Chair and to the Committee.

[The Chair]

Do you actually want to move the amendment?

[Danny Kruger]

No. I am so sorry. The confusion of the last group has thrown me. I am very grateful to my right hon. Friend.

--- Later in debate ---

[Danny Kruger]

I am sorry for having begun speaking to the wrong amendments earlier. I was trying to speak to amendment 58—I could not read my own notes—not amendments 55 or 56.

I do not want to reheat the previous arguments about the imperative—as I believe it is—to refer to a psychiatrist. I support the suggestion of the hon. Member for Ashford and the hon. Member for Runnymede and Weybridge (Dr Spencer) that the independent doctor should have relevant qualifications in psychiatry and experience in assessing mental capacity through their professional qualifications. The importance of having a holistic multidisciplinary team has been well argued and subsequent amendments to the Bill have attempted to delivered that.

I want to emphasise that if we adopted the amendment tabled by the hon. Member for Ashford, we would be acknowledging the reality that assisted dying is not like other medical decisions. By explicitly including psychiatrically trained clinicians, we would be giving special regard to the mental state of patients making an existential decision, not just a treatment decision. That is particularly appropriate for patients who are not expecting to significantly suffer bodily due to their terminal illness.

We have heard many stories of people who have died in painful or undignified ways, but that does not reflect the experience of the majority of those with a terminal illness—90% of cases, according to some studies—who are able to receive adequate or complete pain relief. For people who do not have an obvious motivation to have an assisted death, such as avoiding extreme pain, an investigation by a psychiatrist of their mental state would surely help to safeguard against those with depression or other ameliorable mental conditions that impair capacity accessing an assisted death.

I want to emphasise the evidence that we received from Professor Gareth Owen, who in 2021 conducted a large-scale survey of medical professionals in England and Wales. That found that non-psychiatric doctors—general practitioners and other doctors not trained in psychiatry—were less confident than other professionals in assessing capacity. It also found that 6.9%—less than 7% —of non-psychiatric doctors rated themselves as assessing capacity very well, which I think is significant. To place all the responsibility for assessing capacity and coercion, which are difficult to assess and contain complexities that psychiatrists are best placed to appreciate, in the hands of doctors who do not have specialist expertise is to be content with coercion being missed and capacity being poorly assessed. If we want to ensure that these tests are done well, the only way to do that is to involve psychiatrists, as the hon. Member for Ashford said.

[Sean Woodcock]

I will speak briefly on amendment 21, although I will commend my hon. Friend the Member for Ashford for his contribution to the debate. He speaks with clear expertise and experience, and a real love for his profession, and we all benefit greatly from his insights.

Over the last few weeks, I have found myself voting the opposite way from the promoter of the Bill on a number of occasions, but I am not opposed to assisted dying in principle. My issue is more about whether we can ever make it safe enough; the difference between us is marginal. One thing that has been apparent throughout these debates is her passion for improving the training for those involved in palliative care, and in the wider NHS and social care generally.

That is why I want to speak to amendment 21. In the witness testimony, particularly from Rachel Clarke, there was a lot of concern about whether coercion and people being put under pressure to go for assisted dying would be picked up, and whether the NHS was geared up for that. I think that this amendment, tabled by my hon. Friend the Member for Lowestoft, goes some way to addressing that.

I do not think training is a silver bullet, hence my votes over previous weeks, but it would make a massive difference. That is true not only for the implementation of the Bill; it would have wider benefits for the NHS, social care and palliative care more generally. Even though those are not necessarily in scope of the Bill, I suggest that they are good things, which is why Committee members should get behind amendment 21.

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

Danny Kruger Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

On a point of order, Mr Dowd. My understanding is that we are planning to sit a bit later today, which is fine by me. I wanted clarity from you that the Committee has no hard deadline—that although the intention is that Report stage will take place on 25 April, if the Committee wished to go further, it could. I was a little concerned by some of the remarks made in this morning’s sitting about people being conscious of time; there is a sense of being asked to speed up as we go. Am I right in saying that the Committee can take as long as it needs to, and that in fact it should, to debate this very important matter?

[The Chair]

The short answer is yes. I think Members will inevitably deal with this in as sensitive and conciliatory fashion as possible, notwithstanding that point.

Clause 4

Initial discussions with registered medical practitioners

Amendment proposed (this day): 342, in clause 4, page 2, line 23, leave out

“may (but is not required to)”

and insert “must”.—(Danny Kruger.)

This amendment would strengthen the requirement for a registered medical practitioner to conduct a preliminary discussion.

Question again proposed, That the amendment be made.

--- Later in debate ---

[Kim Leadbeater (Spen Valley) (Lab)]

I will try to keep my comments as brief as possible because we have had another very thorough discussion. First, my amendment 424 is, as the Minister said, a simple drafting change in clause 40 that confirms that “preliminary discussion” means a discussion as per clause 4(3).

Amendment 275 from my hon. Friend the Member for Sunderland Central would, in many circumstances, broaden the scope of the conversation that the doctor would have with the patient, and I am happy to support it.

I am also happy to support the very sensible amendment 108 from my hon. Friend the Member for East Thanet (Ms Billington). It is perfectly acceptable to ask the doctor to offer to refer the patient to a specialist, as they would probably do in most cases anyway, but the amendment is for clarity.

I refer colleagues to the comprehensive comments on my amendment 183 earlier in proceedings, and also to the support of the British Medical Association. Following Second Reading, I listened carefully to Members’ concerns about the possibility of doctors only discussing assisted dying with patients. Even though the Bill states that that cannot be the case, for the avoidance of any doubt the amendment emphasises that the initial discussion mentioned in clause 4(3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4). Accordingly, such a preliminary discussion may not be conducted in isolation from an explanation of and discussion about the matters mentioned in paragraphs (a) to (c) of that subsection—that is, doctors cannot discuss the option of assisted dying in isolation but only in conjunction with discussion about all other available and appropriate treatment.

Indeed, Andrew Green of the BMA told us that

“some patients find it very difficult to bring up sensitive subjects with their doctors, even when those are the most important thing on their mind.”

He asked us to

“please do not pass legislation that makes it harder for doctors to understand their patients.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 42, Q24.]

That concludes my remarks.

[Danny Kruger]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 270, in clause 4, page 2, line 25, at end insert—

“(3A) Before conducting a preliminary discussion under subsection (2) the registered medical practitioner must ensure that the person has no remediable suicide risk factors which pose a significant risk to their life.”—(Danny Kruger.)

This amendment requires that the doctor ensures that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying.

Question put, That the amendment be made.

--- Later in debate ---

This amendment emphasises that the initial discussion mentioned in subsection (3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4).

[Danny Kruger]

I beg to move amendment 71, in clause 4, page 2, line 31, at end insert—

“(4A) The practitioner must, following the preliminary discussion under subsection (3), refer that person to the Assisted Dying Agency if the person asks them to do so.”

This amendment is consequential on NC4 and would establish a pathway by which a person is referred to the Assisted Dying Agency.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 72, in clause 5, page 3, line 16, leave out paragraph (b) and insert—

“(b) has been assigned to the person by the Assisted Dying Agency,”

This amendment is consequential on NC4 and provides that the coordinating doctor must have been assigned to the person by the Assisted Dying Agency.

Amendment 73, in clause 7, page 4, line 21, leave out paragraphs (b) and (c) and insert—

“(b) provide the person who was assessed and the Assisted Dying Agency with a copy of the statement.

(3A) Upon receipt of the statement specified in subsection (3)(a), the Assisted Dying Agency must assign to the person, as soon as practicable, another registered medical practitioner who meets the requirements of section 8(6) for the second assessment (‘the independent doctor’).”

This amendment is consequential on NC4 and would require the coordinating doctor to send a copy of their statement to the Assisted Dying Agency. That Agency must then to assign an “independent doctor” to the person.

Amendment 75, in clause 8, page 5, line 9, leave out “coordinating doctor” and insert “Assisted Dying Agency”.

This amendment is consequential on NC4.

Amendment 74, in clause 8, page 5, line 16, at end insert—

“(ba) has been assigned to the person by the Assisted Dying Agency,”.

This amendment is consequential on NC4 and provides that the independent doctor must have been assigned to the person by the Assisted Dying Agency.

Amendment 76, in clause 9, page 6, line 14, leave out paragraph (e).

This amendment is consequential on NC4.

Amendment 77, in clause 11, page 7, line 18, after “appointment,” insert

“by the Assisted Dying Agency”.

This amendment is consequential on NC4.

Amendment 78, in clause 14, page 10, line 7, leave out from “person)” to end of line 12 and insert “the Assisted Dying Agency”.

This amendment is consequential on NC4.

Amendment 79, in clause 16, page 11, line 18, leave out subsections (2) and (3) and insert—

“(1A) The Assisted Dying Agency must, as soon as practicably possible, record the making of the statement or declaration.”

This amendment is consequential on NC4.

Amendment 80, in clause 17, page 11, line 36, leave out subsections (2) and (3) and insert—

“(1A) The Assisted Dying Agency must record the cancellation.”

This amendment is consequential on NC4.

New clause 4—Assisted Dying Agency—

“(1) There shall be a body known as the Assisted Dying Agency (‘The Agency’).

(2) The purpose of the body is to coordinate requests from people to be considered for assisted dying, including assigning, at the appropriate junctures, a coordinating doctor and independent doctor for a person seeking assistance to end their own life.

(3) Where a person has previously been referred to the Agency, no future referral relating to that person can be proceeded with by the Agency unless it considers there has been a material change in the person’s circumstances.

(4) The Secretary of State must make regulations setting out—

(a) the staffing and remuneration of such staff,

(b) the procedures of the Agency, and

(c) the means by which the Agency can pay coordinating doctors and independent doctors for services rendered under this Act.

(5) The Agency’s expenditure is to be paid out of money provided for by Parliament.

(6) The Agency must, for each financial year, prepare accounts in accordance with directions given to it by the Treasury.

(7) The Agency’s chief executive is its accounting officer.

(8) As soon as reasonably practicable after the end of each financial year, the Agency must prepare a report about the performance of its functions during that year and lay that report before both Houses of Parliament.

(9) Regulations under subsection (4) are subject to the affirmative procedure.”

This new clause would create a new body that was principally responsible for coordinating and recording statements and declarations in relation to a person’s request for assistance to end their own life.

--- Later in debate ---

[Danny Kruger]

Although these provisions may seem irrelevant to the Bill—I do not think any of us wishes to see the creation of an assisted dying agency—I am nevertheless grateful to my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer) for tabling them. He is playing his usual role of keeping us honest.

It is extraordinary that nowhere does the Bill lay out exactly how the assisted dying service would be delivered—whether it would be an NHS service, a private service or some mix of the two. I am therefore grateful to my hon. Friend for being clear in his suggestion that it should be a non-NHS service and that, if we are to pass this law, we should establish a bespoke agency for the explicit purpose of delivering that service. It is a rather macabre but logical way of delivering on the proposal in the Bill.

The fact is that many doctors, faced with the prospect of being asked to participate in assisted dying, have expressed their preference for it to be delivered outside the NHS. In its written evidence, the British Medical Association, which has been cited a number of times today, says:

“There is nothing in the Bill about how an assisted dying service might be delivered, although the possibility of a separate service is mentioned in the explanatory notes.”

The BMA’s view is that assisted dying

“should not be part of the standard role of doctors or integrated into existing care pathways”.

I stress that point, because it has often been suggested in the course of debate that the way assisted dying will work will be as part of a holistic range of options—pretty indistinguishable from palliative care or other treatment options put before patients. The BMA is clear that assisted dying

“is not something that a doctor can just add to their usual role.”

The Royal College of General Practitioners has also pointed out in evidence that the shape of the service is not set out in the Bill.

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

On a point of order, Mr Dowd. In his opening sentence, my hon. Friend said that none of us wanted to see the creation of an assisted dying agency. My interpretation of our speaking to a particular amendment is that we have to address what it intends to do in the Bill. My hon. Friend said that he does not want what the amendment intends and that he is speaking more generally about the delivery of the service. Could we have your guidance as to whether that is in order? One of our problems is that we are having very expansive debates, and previous Chairs have sought to keep everyone in order. I am anxious that my hon. Friend does not exhaust himself by straying from the central point in the amendment.

[The Chair]

The fact of the matter is that the hon. Member does not have to agree with the amendment, so he is perfectly entitled to speak in that regard.

[Danny Kruger]

I am grateful to you, Mr Dowd, and to my right hon. Friend for his concern for my welfare, which is much appreciated. However, he will be relieved to know that I have plenty of energy and can keep going.

To speak seriously, it is very germane to the Bill that the amendments are considered. As I was explaining, GPs and other medical practitioners have been concerned about the absence from the Bill of clauses to specify the delivery of the service, so I am grateful that we have this opportunity to discuss that and to hear from the Minister and the sponsor how they imagine the Bill would operate and whether it would, indeed, be appropriate to establish some kind of agency along the lines proposed. The reason I object to an assisted dying agency is that I object to assisted dying, but I see the logic of the proposal if we are to proceed with the principle of the Bill.

It is extraordinary that this crucial question is not set out. In his evidence to us, Chris Whitty said rather airily that it was for Parliament to decide how the service should be delivered. I would stress that most medics involved, particularly in palliative care and care for people at the end of life, are very hostile personally to the suggestion that they should participate in assisted dying. The BMA’s 2020 survey of its members found that 76% of palliative medicine doctors would be unwilling to participate if assisted dying were legalised. The Royal College of Physicians 2019 members’ poll found that 84% were opposed.

[Kit Malthouse]

This is not in order; it has nothing to do with the amendment.

--- Later in debate ---

[Kit Malthouse]

I am grateful, Mr Dowd.

[Danny Kruger]

I, too, am grateful, Mr Dowd. I stress that I am discussing the suggestion in the amendment that assisted dying be taken out of the NHS and not be part of the normal pathways doctors are invited to participate in. It strikes me as relevant that most doctors, were the law to be passed, would wish for something along the lines of the amendment to be included.

We do not know exactly how that would work. We know that it could potentially be private, according to the scheme set out in the amendment, or it could be within the NHS. We know from the references in clause 40 that private provision is envisaged, because of the talk of reasonable remuneration for the provision of services. So it would be outside the normal service expectation of medical professionals employed by the NHS; indeed, we know that it could be a lucrative market.

[Sojan Joseph]

Does the hon. Member think that, if we bring in an agency from outside the NHS—from the private sector—this will become like a business?

[Danny Kruger]

The hon. Gentleman is absolutely right. The opportunity is there in the Bill for private businesses to be established to deliver assisted dying services. Indeed, it would be quite a lucrative money-making enterprise. Estimates have been given of between 5,000 and 17,000 assisted deaths per year, depending on how they are arrived at. If the charges employed by Dignitas—which is in a sense the model being proposed here—are anything to go by, it could be in the region of £5,000 to £10,000 per patient. Even a small proportion of that would be significant—a multimillion-pound business would be possible under the Bill. Advertising would also probably be possible; we saw TfL suggest that the Dignity in Dying adverts in the tube before Second Reading were compliant. There is no prohibition in the Bill on advertising or on people making money from it.

However, the Bill also specifies that this would be a state-protected service, so if it were to be a private enterprise, it would have all sorts of state protections that would not normally apply to private providers of anything. Under clause 25, the providers would be exempt from any civil liability for providing assistance under the Bill. Under clause 29, a death would be exempt from investigation under the Coroners and Justice Act 2009. Clause 30 says that a failure to comply with any code of practice

“does not of itself render a person liable to…criminal or civil proceedings”.

The only monitoring that would be done would be undertaken by the voluntary assisted dying commissioner, who is not an independent figure, but the person responsible for setting up the panels that approve the deaths.

[The Chair]

Order. We need to get back to the assisted dying agency. Can the hon. Member keep to that, please?

[Danny Kruger]

I shall—I am winding up now, Mr Dowd. These amendments go to the heart of this great absence—this blank space—in the middle of the Bill, which is how on earth it will be delivered. Who would deliver it, and under what regulation? What would be their terms of engagement? All of that represents quite a scandalous gap in the Bill, and my concern is with that enormous gap.

I want to conclude with a reflection on that lack of clarity. Elizabeth Gardiner, who I understand was the very experienced parliamentary drafter who contributed her time to draft the Bill, talked on the Hansard Society podcast of the opportunity that drafting has to change the law. She noted that if the law

“is a restriction that would curtail the ability of this to be delivered through the National Health Service, the Bill could change that.”

So it has been suggested that the Bill would require changes to the National Health Service Act 1946 to remove what the Hansard Society calls the “duty to protect”.

[The Chair]

Order. The hon. Gentleman heard what I said earlier, and I do not want to reaffirm it, but can we get back to the substance of the assisted dying agency provision, please?

[Danny Kruger]

I have one last point to make, Mr Dowd, which I hope you will regard as in order because, as I said, it goes to the heart of things. At the moment, the Bill does not specify how these things should be done, and Elizabeth Gardiner, the drafter behind it, said on the radio:

“we didn’t have time to go into all the detail of how those regimes work and to make the provision on the face of the Bill. And so there are regulation making powers there, which enable that provision to be set out”—

I believe that that is in clause 32. Enormous Henry VIII powers are being established. I deeply regret the gap in the Bill, and I am grateful to my hon. Friend the Member for Runnymede and Weybridge, who tabled these proposals, for enabling us to have this debate.

[The Chair]

Order. I remind the hon. Member to keep to the issue that we are discussing, because if he or any other Member does not, and goes beyond the scope of what they really should be sticking to, I will take a much less lateral approach in future. I say that gently and with the best intention.

[Kim Leadbeater]

I have nothing to add, other than to agree with the hon. Member for East Wiltshire; I do not think any of us on the Committee are keen on the implementation of the assisted dying agency.

[Danny Kruger]

Will the hon. Member give way?

[The Chair]

Too late.

[Danny Kruger]

I really regret that we have had such a small debate on the enormous question of how on earth assisted dying would actually be delivered. We are leaving it to Ministers, subsequent to the passage of the Bill, to design this service. The clear possibility is that a private enterprise could run the service. It might be an NHS service. The fact that that is unclear in the Bill is shameful, but I am grateful we have had the opportunity to debate the matter, sort of, and I am not going to press the amendment to a vote. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn. 

Amendment proposed: 276, in clause 4, page 2, line 31, at end insert—

“(4A) A medical practitioner must not conduct a preliminary discussion with a person under subsection (3) until a period of 28 days has elapsed, beginning with the day the person had received a diagnosis of the terminal illness.” —(Naz Shah.)

This amendment would mean a doctor could not conduct a preliminary assessment until 28 days from the day the person received a diagnosis of the terminal illness.

--- Later in debate ---

[The Chair]

Before I call Danny Kruger to move amendment 412, I remind Members to keep within scope and to ensure that any points raised are relevant and not repetitive, or I will intervene.

[Danny Kruger]

I beg to move amendment 412, in clause 4, page 2, line 32, leave out subsection (5).

[The Chair]

With this it will be convenient to discuss the following:

Amendment 341, in clause 4, page 2, line 33, leave out from “subsection (3)” to the end of line 36 and insert

“is not required to refer the person to another medical practitioner but must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”

This amendment would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion with a person must provide information to the person about where they can have that discussion, but that this need not take the form of a referral.

Amendment 338, in clause 4, page 2, line 34, leave out from “so” to end of line 36 and insert

“direct them to another registered medical practitioner or the independent information and referral service established under section [Independent information and referral service]”.

This amendment, which is linked to NC13, would mean that a registered medical practitioner who was unwilling to have preliminary discussions would direct the person to another registered medical practitioner or an independent information and referral service.

Amendment 287, in clause 4, page 2, line 34, leave out from “practitioner” to end of line 36, and insert

“who is qualified to undertake such a preliminary discussion, and set out palliative medicine options to provide the patient with appropriate end of life care, including referring them to a palliative medicine expert.”

This amendment means that the medical practitioner who is unwilling to have an initial discussion with a person must, both refer them to another registered medical practitioner and set out the palliative care options including referring them to a specialist.

New clause 13—Independent information and referral service—

“(1) The Secretary of State must, by regulations, make provision to establish an independent information and referral service to—

(a) provide information to persons who are, or may be, eligible for assisted dying in accordance with this Act, and

(b) where requested, facilitate the person’s access to assisted dying in accordance with this Act.

(2) Regulations under subsection (1) are subject to the affirmative procedure.”

This new clause would require the Secretary of State to make provision for an independent information and referral service.

[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 ---

[Kim Leadbeater]

I rise to speak to amendments 341, 338 and 412 together, and I welcome the debate on these important amendments. Choice is one of the key tenets of the Bill, primarily—but not exclusively—for terminally ill adults with a limited time to live. Choice is also very important for medical practitioners, and I am very respectful of, and acknowledge the importance of, conscientious objection for doctors. When it comes to assisted dying, I believe that they should also have choice. Indeed, the Bill is written so that they can choose not to participate in the process for any reason. That is the BMA’s view, and I agree with it.

The BMA has a position of neutrality on assisted dying, and there are a range of views within medical professions, as there are within all groups of people. That is why I have adopted its position of an opt-in model for the purposes of the Bill. Nevertheless, the process must remain patient focused at all times, and that means enabling them to have a discussion on such an important matter. It would not be right to rely on online advice or even the best-designed written materials. As we have already established, doctors are used to having sensitive and compassionate discussions with people who are terminally ill, and there can be no substitute for that. While a doctor may not wish to participate themselves, and I fully respect that, they still have a responsibility towards their patients, and that should include ensuring that they can speak to a properly qualified medical practitioner at such a difficult time.

I understand that the BMA and others would not be comfortable with the word “refer”, which I understand to have a special meaning within medical practice. The GMC guidelines use different language. They talk about where a doctor has a conscientious objection, in which case they are advised that they must make sure that arrangements are made for another suitably qualified colleague to take over their role. The BMA’s guidance says that patients must be able to see another doctor, as appropriate, and that it need not always be a formal procedure. It is not, however, sufficient to simply tell the patient to seek a view elsewhere—I agree completely.

The BMA supports amendment 341, which says that a doctor

“must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”

I am therefore happy to support the amendment today and, if it were to need further adjustment, I am very happy to consider alternatives based on existing best practice. I would be very happy to meet with the hon. Member for Sleaford and North Hykeham, who is herself a doctor, to discuss her thoughts and draw on her considerable medical experience.

[Danny Kruger]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 341, in clause 4, page 2, line 33, leave out from “subsection (3)” to the end of line 36 and insert

“is not required to refer the person to another medical practitioner but must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”—(Rebecca Paul.)

This amendment would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion with a person must provide information to the person about where they can have that discussion, but that this need not take the form of a referral.

[Juliet Campbell]

I beg to move amendment 125, in clause 4, page 2, line 35, leave out from start of line to end of line 36 and insert

“who is on the Register of Assisted Dying Medical Practitioners.”

This amendment provides that only a medical practitioner who is on the Register of Assisted Dying Medical Practitioners as provided for in NC7 would have a person referred to them.

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[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?

[Danny Kruger]

I think that we are just concluding one of the most important debates that the Committee will have: the debate on clause 4. I welcome the concession from the hon. Member for Spen Valley, particularly her commitment to modify the obligation to refer. That is welcome and will make the Bill a little safer.

In our debates on the clause, there has been clear confusion, as my hon. Friend the Member for Reigate has just mentioned, about the extent to which assisted dying is a healthcare treatment. That speaks to the question of whether there is an obligation on doctors to offer this treatment—as there should be, if it is a treatment that is one of a range of options for which the patient is eligible—or whether it is something that they are not obliged to offer. That confusion, which was present in the Committee’s exchanges, remains. I want to record in hon. Members’ memory the fact that that question was unresolved. In my view, that is extremely unsatisfactory.

Despite some welcome concessions, the Committee has just decided to reject a series of amendments that would have protected both doctors and patients. Most concerningly, we rejected an amendment to give children the right to be protected from the suggestion of an assisted death before they are even eligible for it.

I will conclude by referring to evidence, which I do not believe has been referred to so far in the debate, on the question of how assisted dying is received as a suggestion or offer, particularly by marginalised groups. I was very concerned by the oral evidence that we took from Professor Ahmedzai, who supports assisted dying. In written evidence, he has said explicitly that he especially wants the option to raise assisted dying with

“patients who are poorly educated, ill-informed or seem to be unaware of the option”.

He has explicitly required and requested the opportunity to put it to these disadvantaged, marginalised patients: “poorly-educated, ill-informed” people. Compassion in Dying, the sister organisation to Dignity in Dying, which supports the Bill, makes the same point: that marginalised people will need to be “directly prompted” with the offer.

I am afraid to say that, in rejecting the amendments, the Committee has endorsed the approach that people who are particularly marginalised and disadvantaged need to have this suggestion explicitly made to them. I am astonished that the Committee proposes to proceed on that basis, which completely misunderstands the dynamic of vulnerable people in the face of authority. I am very distressed to find that the Committee thinks that acceptable, and I am very sorry that apparently we are proceeding with the clause. I do not propose to put it to the vote, because the Committee’s will to proceed is fairly clear, but I hope that everybody is fully aware of what they are doing.

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[Danny Kruger]

I am grateful for the points made by my right hon. Friend the Member for North West Hampshire. I will speak briefly to amendments 403 and 404, which would create an expectation that a patient at least addresses the question of whether their family is aware of the decision they are making. In an amendment that has not been selected for debate today, I proposed simply to make that expectation clear.

My personal view is that I do not accept that this is healthcare, and therefore that a doctor would have an obligation to ensure that the next of kin of somebody to whom they are proposing to give lethal drugs is informed. However, in the spirit of the Bill, which is all about autonomy, and in an attempt to be constructive and put forward amendments that might be accepted, I accept that this is a decision for the individual in the same way as a healthcare decision, and that there is therefore no obligation under rules of patient confidentiality and the expectations around healthcare that the family should be informed.

Nevertheless, creating a moment at which the first doctor the patient speaks to gently encourages them to consider telling their family before taking the enormous step of signing the first declaration is appropriate. The amendment would give the patient three options: first, to confirm that they have informed their family of their wish to be provided with assistance to end their life.

[The Chair]

Order. I understand that the hon. Gentleman wants to touch on that amendment, but it has not been chosen today. He is talking about the declaration that the person has informed their family of their decision and taken their opinions into consideration. We are not dealing with that today.

[Danny Kruger]

Nevertheless, amendments 403 and 404 have been selected for debate, and it is those amendments that would effect that declaration in the Bill.

[The Chair]

I ask the hon. Gentleman to take the spirit of what I am saying into account.

[Danny Kruger]

I am grateful to you, Mr Dowd, but I want to explain why these amendments are appropriate to the Bill.

The patient would have the opportunity to declare clearly that they do not have a family. I take the point made by my right hon. Friend the Member for North West Hampshire; it is not always clear what a family is. Nevertheless, if the patient wants to specify that they have no family or do not want to inform their family, the amendments would give them that right. I want to emphasise the importance of this consideration. I recognise that clause 9, which will come later in the process, includes consideration of the family. It states that, in so far as the assessing doctor considers it appropriate, they may advise the patient to inform their family, so there is recognition of that question a little later. My suggestion is that it should come earlier because it needs to take place before the first declaration is signed.

Crucially, we need to consider the wider impact of not considering or involving the family, particularly when children or dependants are involved. The Bill accepts the scenario where a family can find out after the fact—not through any formal notification, they just discover—that their loved one has ended their life with the help of doctors and the state. Families can be badly impacted by an assisted suicide: clinical grief disorders, depression and post-traumatic stress disorder are all harms that can follow from a family member taking an assisted death. It is unethical and irresponsible not to factor that in as we discuss and design the new law.

A parent may choose to end their life under the Bill, but is not required in any way to consider notifying their family. I wonder if the sponsor could clarify what would happen if they were the sole carer of a minor—would there be an obligation for anyone to inform the child that this was happening? One hopes that that would be an extremely rare scenario; nevertheless, it is possible under the Bill.

I want to mention two more groups quickly. In written evidence, a group of anorexia nervosa sufferers and carers said:

“The Bill does not anticipate situations where someone seeks to end their life as a result of cognitive symptoms inherent to the illness, as is the case with AN. For these patients, families would often be needed to advocate for their loved ones and their potential to recover…Without family involvement, patients may make decisions in isolation, potentially influenced by cognitive distortions or feelings of hopelessness inherent to the illness.”

I hope that we do not want to allow that scenario.

Finally, Dr Jamilla Hussain, who we have heard from a few times, said in written evidence that in her

“consultation with structurally disadvantaged ethnic minority groups”—

which include Pakistani, Roma and Black Caribbean community groups, they showed much concern about the exclusion of families. She said:

“it was emphasised that, traditionally, family and community members provide hope and strength when someone feels like life is too much. There is apprehension that such expressions of care and support could be reframed through a medical or legal lens as coercion.”

That is the saddest thing, which was hinted at quite strongly—in fact, stated explicitly—in some of the evidence sessions. It has been suggested that wanting a loved one to live is seen by doctors as a form of coercion that should be resisted; that trying to argue a loved one out of an assisted death is the coercion that we need to guard against and, on that basis, we should not be making any expectation that families are informed. What a tragic thing for us to say. To enable doctors to issue lethal drugs that kill people without their family knowing is an absolutely tragic thing. I beg the Committee to consider what on earth we are doing allowing that.

[The Chair]

I apologise to the Member, who was within his rights to speak to amendments 403 and 404.

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[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

I rise to set out why—reluctantly—I cannot support amendments 403 and 404, which have been tabled by my hon. Friend the Member for East Wiltshire. It is not because of the principle involved, because my hon. Friend was very clear in setting out the amendments. They would not provide for a prescriptive situation where an individual must tell their family. A range of options are set out, which I anticipate that any sensible and responsible doctor or clinician would take a patient through, encouraging them to involve their family in their decision making.

The issue that I have is around the legal clarity of the wording of the amendments, because under the English and Welsh legal system there is no statutory definition of “family”. There is a concept of family, but the concept of family to me may be very different from that of my neighbour, or from that of someone who lives in another city. For example, for some people stepbrothers, stepsisters and step-parents are very much part of their family; for others, they are not. For some people, unmarried couples with children are a family; for others, they are not. For some people, unmarried couples without children are a family; for others, they are not.

[Danny Kruger]

I take that point; families are difficult to define. Nevertheless, the Bill currently refers to the opportunity for a doctor, or the suggestion that a doctor,

“in so far as the assessing doctor considers it appropriate, advise the person to consider discussing the request with their next of kin and other persons they are close to.”

That is more precise. Would my hon. Friend accept an amendment along the lines that I have proposed, prior to the first declaration, but using the language that is currently in the Bill about

“their next of kin and other persons they are close to”?

[Dr Shastri-Hurst]

That would satisfy me. The reason I say that is because at the moment the wording is too broad and ill-defined. The question is: is this about the closeness and proximity of a relationship? The suggested wording that my hon. Friend just put forward would be much closer to that and much clearer, and more akin with the language of medical registration. When someone turns up in A&E, they are asked to give the name of their next of kin. That defines the closeness, the proximity and the permanency of that relationship.

If my hon. Friend was perhaps to consider withdrawing this amendment and tabling it again in an alternative form, or rewording it, that would certainly be something that I would be open to supporting. I have outlined why, as the amendments currently stand, I cannot support them.

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

Danny Kruger Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

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

As I have stated previously, my remarks on behalf of the Government on these amendments will provide a factual explanation. I shall not offer a position on how the Committee should vote, as that remains a matter of conscience. The overarching theme of the amendments relates to the requirement on how and when a medical practitioner may raise the matter of assisted dying.

Clause 4(2), as drafted, provides that nothing prevents a medical practitioner from using their professional judgment to decide when to raise the subject of assisted dying. Amendment 278 seeks to prevent a doctor from raising the subject of assisted dying if the person has a recorded advance decision in their medical records that states that in future they will not want assisted dying.

The Mental Capacity Act 2005 enables a person with capacity to make an advance decision to refuse a specified form of treatment in future, should they lack capacity. A person who has lost capacity under the Mental Capacity Act would not be eligible for assisted dying under the Bill. Where such an advance decision is in place, the effect of the amendment would be to prevent the doctor from raising the subject of assisted dying, unless the person indicates to the doctor that they wish to change their previous decision, that they wish to seek assistance under the legislation and that they have the capacity to do so.

Technically, amendment 278 appears unnecessary, because advance decisions under the Mental Capacity Act are not relevant to assisted dying. That is because advance decisions are about refusing treatment at a time when a person no longer has capacity, and assisted death would be available only to those who have capacity.

As drafted, clause 4(1) states:

“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person”.

but clause 4(2) specifies that they may do so if, in exercising their professional judgment, they consider it appropriate. Amendment 8 would prevent a registered medical practitioner from raising with a person the subject of provision of assistance under the Bill, unless the person has indicated to that practitioner or to another registered medical practitioner that they wish to seek assistance to end their own life. The effect would be that any conversation on assisted dying will need to be patient-initiated, and not at the discretion of the medical professional within a wider conversation about end-of-life care.

The effect of amendment 124, as with amendment 8, would be to prevent a registered medical practitioner from raising with a person the subject of provision of assistance under the Bill. That would mean that the person will need to indicate to a registered medical practitioner that they wish to seek assistance to end their own life before an initial discussion can take place. The effect would be that assisted dying can be discussed only if the patient has initiated the conversation.

The Government’s assessment of amendment 319 is that, as drafted, it would not prevent the subject of an assisted death from being discussed with a person who is under 18. There is already a requirement that, to be eligible for the provision of assistance under the Bill, a person must be aged 18 or over at the time that they make their first declaration under clause 1(1)(b).

Amendment 319 would impose additional requirements on the approach that a medical practitioner must make if raising the subject of assisted dying with a person who has a learning disability or is autistic. It would require the person to be provided with accessible information and given sufficient time to consider it. It would further require that they must have a supporter and/or independent advocate present for the initial discussion. The amendment would require that a person with autism or a learning disability must have a supporter or independent advocate present for the discussion, even when they have capacity or are high-functioning. Autism is a spectrum disorder, meaning that autistic people have diverse and varying needs, so the effect of the amendment would vary among individuals.

It is already the case that all registered medical practitioners, in meeting their professional standards, are expected to communicate information clearly and effectively. That includes allowing sufficient time for the individual to consider and process the information provided. For example, the General Medical Council’s “Good medical practice” states that all GMC-registered clinicians

“must take steps to meet patients’ language and communication needs”

to support them to

“engage in meaningful dialogue and make informed decisions about their care.”

Amendment 368 would require registered medical practitioners, when deciding if and when it is appropriate to discuss assisted dying with a person with Down’s syndrome, to act in accordance with the Down Syndrome Act 2022. The Act requires the Secretary of State to issue guidance to relevant authorities on what they should be doing to meet the needs of people with Down’s syndrome. Although this work is being taken forward as a priority by the Department, no statutory guidance has yet been published under the Act.

The relevant authorities in scope of the Act are institutions such as NHS trusts. The Act does not provide for guidance to be prepared for individual doctors. The relevant authorities must have due regard to the statutory guidance, which enables them a degree of discretion in following it, but the amendment would require medical practitioners to act in accordance with the guidance. It might therefore create uncertainty as to how a doctor can comply with their obligations under the Bill.

[Danny Kruger (East Wiltshire) (Con)]

I hear what the Minister says—the guidance does not exist and there is concern that the amendment may therefore induce some confusion—but would the answer not be to put a commitment into the Bill that the Secretary of State will issue guidance on how the 2022 Act could be applied in the context of the Bill?

In the light of our conversation at the Committee’s last sitting, I put on the record my intention to press the amendment if the Minister cannot give a commitment now to introduce an amendment later that the Secretary of State will introduce statutory guidance to ensure that proper care is taken of people with Down’s syndrome in accordance with amendment 368.

[Stephen Kinnock]

The challenge is the dissonance in how the guidance under the Down Syndrome Act, which is currently very close to publication, is directed towards authorities such as trusts, but there is no coverage around individual doctors. At this stage, without seeing a clear distinction between the two or how it would work for individual doctors, the Department’s concern is that it could create confusion as to the obligations on individual medical practitioners under the 2022 Act. I am obviously open to conversations about how to clear that up, but the lacuna between the authorities and the individual doctors is the problem being flagged by the Department.

--- Later in debate ---

[Stephen Kinnock]

I thank the right hon. Gentleman for that clarification and apologise for my misunderstanding; I thought he was referring to the guidance that we are currently working on under the terms of the 2022 Act. Yes, absolutely: the Bill currently specifies a two-year commencement period, within which a whole range of operationalisation work will need to be done. All of that will need to be consulted on; we will not do it all in an ivory tower from Whitehall or Westminster.

[Danny Kruger]

It is welcome that a commitment has been made to meet my right hon. Friend the Member for East Hampshire, who tabled the amendment, but a commitment to consult is not the same thing as specific protections in the Bill for people with Down’s syndrome. What we really need is a commitment in the Bill that there will be statutory guidance. There will be opportunities for that later, so we may not need to press the amendment to a vote, but if we cannot have a commitment, we must press it.

[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.

--- Later in debate ---

“create opportunities for patients to raise concerns and fears about the progression of their disease and about their death and to express their wishes…listening to patients, providing them with information, and respecting their decisions and choices, are integral parts of good practice.”

[Danny Kruger]

The hon. Lady says that the GMC states that doctors have an obligation to raise the treatment options before them, and I think that she thinks that this is a treatment option. Surely the obligation is on doctors to raise assisted dying in all cases where it may be an option for the patient. Does the hon. Lady agree that doctors should offer assisted dying when that treatment may be appropriate for the patient?

[Kim Leadbeater]

I agree that, under the provisions of the Bill, the doctor will have a duty to lay out options available to the patient, if they meet the eligibility criteria—absolutely. That is the whole purpose of the Bill.

[Danny Kruger]

I am grateful to the hon. Lady for giving me a very clear answer. I just want to be totally clear that we understand each other. Is she saying that every doctor facing a terminally ill patient—someone who is eligible under the Bill—should make clear to them that they have the option of an assisted death?

[Kim Leadbeater]

Well, that is the purpose of clause 4: the doctor has to lay out the options available to the patient as long as all the criteria are met.

We can see from the guidance that currently exists that doctors take a very sensitive and patient-centred approach to end-of-life conversations. If the law were to change, that approach would continue with additional training specifically related to assisted dying, as has been discussed. It would also mean that the issues that doctors currently face around discussing assisted dying would be addressed.

As the BMA says, at the moment

“The law does not provide a clear definition of which actions might constitute assisting or encouraging suicide…What if a patient wishes to travel abroad for assisted dying? While the act of travelling abroad for assisted dying is not illegal, assisting, facilitating, or encouraging someone to do so is a criminal offence…doctors need to be aware of the possibility of legal and professional sanctions if they were to do so.”

I imagine that that must create a real sense of jeopardy for doctors. Similarly, the GMC recognises that doctors will face challenges in

“ensuring that patients do not feel abandoned”,

while ensuring that the advice or information that they provide does not encourage or assist a person to end their own life.

These are very difficult conversations for patients and doctors, but by legalising assisted dying in this country we can give clear guidance through a robust legal framework, and create the thorough, transparent process that is currently lacking. These conversations provide a safeguard while the person is still alive. As the former director of public prosecutions, Sir Max Hill, told the Committee,

“In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 86, Q111.]

Mark Swindells from the General Medical Council told us:

“We do get inquiries from doctors who are concerned that they are doing the right thing when it might become apparent to them that a patient wants to travel overseas to access assisted dying.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q36.]

Bringing those conversations out into the open has to be better for the patient and the practitioner.

--- Later in debate ---

[Kim Leadbeater]

The right hon. Gentleman is absolutely right. As I have said, the BMA has been very clear that doctors should use their professional judgment. For example, if they had a patient whom they knew to be deeply religious and who had no interest whatsoever in an assisted death, it is highly unlikely that they would raise the possibility. It is up to them to use their professional judgment to accommodate the wishes of the patient. It has to be a patient-centred approach.

[Danny Kruger]

Will the hon. Lady give way?

[Kim Leadbeater]

I am done.

--- Later in debate ---

Division 22

Question accordingly negatived.

Ayes: 8

Noes: 13

[Danny Kruger]

I beg to move amendment 342, in clause 4, page 2, line 23, leave out

“may (but is not required to)”

and insert “must”.

This amendment would strengthen the requirement for a registered medical practitioner to conduct a preliminary discussion.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 285, in clause 4, page 2, line 28, leave out paragraphs (a) to (c) and insert—

“(a) the person’s diagnosis and prognosis, in consultation with a specialist in the relevant illness, disease or medical condition,

(b) any treatment available and the likely effect of it, in consultation with a specialist in the provision of such treatment,

(c) any palliative, hospice or other care, including symptom management and psychological support, in consultation with a specialist in palliative care.”

This amendment ensures that a specialist carries out the assessment of the patient, the treatment options available and the palliative care options available, since these may not be known to a doctor coordinating an assisted death.

Amendment 343, in clause 4, page 2, line 28, at end insert

“, including any relevant probabilities and uncertainties surrounding the person’s diagnosis and prognosis.”

This amendment would make clear that the doctor conducting an initial discussion is required to discuss the probabilities and uncertainties of any estimates of how long a person may have to live.

Amendment 344, in clause 4, page 2, line 29, at end insert

“, including the risks and benefits of such treatment, potential side effects, and the impact of the treatment on the person’s quality and length of life.”

This amendment would make clear that the doctor conducting an initial discussion is required to discuss the impact of any treatment available.

Amendment 275, in clause 4, page 2, line 30, leave out “any available” and insert “all appropriate”.

Amendment 108, in clause 4, page 2, line 31, at end insert

“and offer to refer them to a registered medical practitioner who specialises in such care for the purpose of further discussion.”

This amendment would require the doctor who has an initial discussion with a person about assisted dying to offer to refer them to a specialist in palliative, hospice or other care.

Amendment 183, in clause 4, page 2, line 31, at end insert—

“(and, accordingly, such a preliminary discussion may not be conducted in isolation from an explanation of, and discussion about, the matters mentioned in paragraphs (a) to (c)).”

This amendment emphasises that the initial discussion mentioned in subsection (3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4).

Amendment 425, in clause 4, page 2, line 31, at end insert—

“(4A) Where a person indicates to a registered medical practitioner their wish to seek assistance to end their own life in accordance with this Act, they must be referred to a multidisciplinary team to explore options for relevant care and support.

(4B) The Secretary of State may by regulations specify the requirements for the multidisciplinary team under subsection (4A).

(4C) The regulations must include a requirement for the multidisciplinary team to include all of—

(a) a registered medical practitioner or registered nurse,

(b) a person registered as a social worker in a register maintained by Social Work England or Social Work Wales, and

(c) a practising psychiatrist registered in one of the psychiatry specialisms.”

Amendment 53, in clause 7, page 4, line 8, at end insert—

“(ca) has relevant and available palliative care options.”

This amendment would mean that someone is only eligible for assistance in ending their own life under this Act if they have relevant and available palliative care options.

Amendment 54, in clause 7, page 4, line 17, leave out “(g)” and insert “(h)”.

This amendment is consequential on Amendment 53.

Amendment 426, in clause 7, page 4, line 26, at end insert—

“(4) The coordinating doctor may not take the steps set out in subsection (3) unless they receive confirmation from a multidisciplinary team that the person has had a meeting with that multidisciplinary team as specified in section 4.”

Amendment 286, in clause 9, page 5, line 36, leave out paragraphs (a) to (c) and insert—

“(a) the person’s diagnosis and prognosis, in consultation with a specialist in the relevant illness, disease or medical condition,

(b) any treatment available and the likely effect of it, in consultation with a specialist in the provision of such treatment,

(c) any palliative, hospice or other care, including symptom management and psychological support, in consultation with a specialist in palliative care.”

This amendment ensures that a specialist carries out the assessment of the patient, the treatment options available and the palliative care options available, since these may not be known to a doctor coordinating an assisted death.

Amendment 424, in clause 40, page 23, line 37, at end insert—

“‘preliminary discussion’ means a discussion of a kind mentioned in section 4(3);”.

This is a drafting change.

--- Later in debate ---

[The Chair]

I suggest that you take the advice of the House on that, because what people say outside of the Committee is beyond my jurisdiction. The House has rules, and if those rules are breached, it is up to any hon. Member, including the Member himself, to raise that with the appropriate authorities.

[Danny Kruger]

On that ruling, Mr Efford, I concur that it is not your job to police social media but I respect the point made by my right hon. Friend the Member for North West Hampshire: it is important that we accurately reflect the debates held in this place. For my part, I will not be commenting externally that the House has disregarded people with Down’s syndrome. I respect and appreciate the point made by the Minister and the hon. Member for Spen Valley that there will be an effort to engage with the Down’s syndrome community in the drafting of further consultation and guidance. Nevertheless, the Committee did just choose to reject an amendment that would have required the Government to put into the Bill the protections specified by the Down’s syndrome community and my right hon. Friend the Member for East Hampshire. I will be making that point, but I undertake to do so accurately and fairly.

I turn to amendment 342 and the other amendments in this group. There is a lot to discuss, and I will get through it as fast as I can. We are talking about the “initial discussion” and the “preliminary discussion”. It might be helpful to clarify those terms, because clause 4 is confusing. The clause refers to an “initial discussion”, which is when the doctor, or maybe the patient, raises the idea—it is unclear who will do that and how. The initial discussion does not actually need to take place at all, but if it does, then, according to the Bill, a preliminary discussion “may” be held, at which the topic is discussed in more detail and there is discussion of the requirements that need to be met, and so on.

I welcome amendment 342, which was tabled some time ago by the hon. Member for Shipley (Anna Dixon). It provides that if an initial discussion is held—that is to say, if the topic is raised as an option and the patient indicates their wish for an assisted death—then a preliminary discussion must also be held. Over the weekend the hon. Member for Spen Valley tabled amendment 419. That would amend clause 6, but I mention it here because it reaches back to clause 4 by stating that the co-ordinating doctor must either hold a preliminary discussion or see evidence that one has been held at an earlier stage.

I was alarmed that the Bill initially envisaged a situation in which someone could turn up to an assisted dying provider and pay their registration and administration fees, and the only thing the co-ordinating doctor would be required to do is check their photo ID. It is extraordinary that that was viewed as acceptable in the first place, so I welcome the tabling of amendment 419. My difficulty is that it leaves clause 4 quite vague and optional about whether a preliminary discussion would take place, and then it applies a retrospective compulsion at a later stage. It allows the preliminary discussion to be not very preliminary at all, because it might take place quite some time later, at the point the co-ordinating doctor is witnessing the first declaration. It could be weeks or months after the process has started, once the patient has found a doctor willing to do the assessment and the paperwork for assisted dying. Rather than tacking the provision on to clause 6, which deals with proof of identity for the witnessing of the declaration later on, let us have it where it is needed—let us insist on it here at the outset of the process.

What should the preliminary discussion consist of? I will speak now to amendment 183 in the name of the hon. Member for Spen Valley, and amendments 343 and 344 in the name of the hon. Member for Shipley. In her explanatory statement to amendment 183, the hon. Member for Spen Valley suggests that it “emphasises” that the preliminary discussion must include a discussion of palliative care options. That is, I am afraid to say, repetitive of the sentence at the start of clause 4(4), which says that the practitioner conducting a preliminary discussion must discuss all the options listed. In the words of my right hon. Friend the Member for North West Hampshire, this is embroidery of the Bill—it is fine lacework, unrelated to the job of the clause itself. The statement in the clause that the doctor must discuss palliative care is, of course, already the law under the Montgomery judgment. There is a genuine obligation on the doctor to discuss all the options that the patient has, which will obviously include palliative care.

I welcome the amendments tabled by the hon. Member for Shipley, which would require the doctor to be clear about the uncertainties of the prognosis and the risks and benefits of the various treatment options. That is absolutely right. That is not embroidery. As a result, patients will make better-informed decisions with full awareness of what is known and, crucially, what is unknown about their prognosis. A requirement in the Bill leaves no room for doubt.

I am concerned by the suggestion that has been repeatedly made that adding obligations for doctors to do their job as guidance currently states is somehow unnecessary or harmful. Indeed, the selective approach of referencing only some elements of GMC guidance in the Bill increases legal uncertainty. Clauses 7 and 9 include only some elements of GMC guidance on the information that doctors must give to patients. There are five areas that the GMC says information should usually include, but the Bill omits

“uncertainties about the diagnosis or prognosis, including options for further investigation”

and

“the potential benefits, risks of harm, uncertainties”

and so on. The guidance explains:

“By ‘harm’ we mean any potential negative outcome, including a side effect”.

Those are quotes from the GMC guidance that are not reflected in the Bill at the moment. Some parts are, but some are not. I think the fact that some guidance has been excluded would be treated as legally significant by the courts. I would be interested to know why the hon. Member for Spen Valley takes the position that those aspects of the guidance should be excluded, and whether she feels that uncertainties and risks of harm are not relevant to the discussion that doctors should have.

We are often told that this Bill is the safest in the world. Other jurisdictions that have inspired the Bill specify in more detail what informed consent should consist of. In Oregon, the doctor must cover the potential risks, the probable result of taking the medication and the feasible alternatives. In Victoria, the doctor is required to discuss the potential risks—in fact there is a whole series of obligations on them. Interestingly, they are encouraged to inform the registered medical practitioner, so to tell the patient’s doctor what is happening, if they do not know already. South Australia specifies all the same things. In his amendment 50, my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer) is trying to mirror precisely that. That is exactly what should be in the Bill, and yet we are told that it is the safest legislation in the world.

Other amendments in this group address who should do the preliminary discussion or referral, and who else should be involved. Amendment 108 in the name of the hon. Member for East Thanet (Ms Billington), which would require the doctor to offer a referral to a palliative care specialist, is very helpful. It is significant that the Committee has already voted not to mandate referral to a palliative care practitioner at the early stage—that fork in the road that we debated earlier—so people will be facilitated down one fork in the road only. This is an opportunity to ensure that there is in fact a referral to a palliative care specialist.

[Kim Leadbeater]

I just want to let the hon. Gentleman and the Committee know that I met my hon. Friend the Member for East Thanet last night, and I am delighted to support her amendment 108.

[Danny Kruger]

I am very pleased to hear that. That is very encouraging news, because I have been concerned that the hon. Lady was resting her case on amendments to clause 12, which would not require a palliative care specialist. I am grateful to her for intervening to inform us of that.

Nevertheless, we need to go further. The amendments in the name of the hon. Member for York Central (Rachael Maskell) would require that a specialist, rather than just a GP, leads the initial assessment. The fact is that despite their enormous range of expertise, general practitioners are not qualified or confident in making prognoses of terminal illness. The written evidence from the Association for Palliative Medicine of Great Britain and Ireland cited a 2021 paper showing that over half of GPs were not consistent in how they applied their predictions to different patients. It is important that specialists in the relevant conditions should be involved in these assessments so that patients receive expert input with a lower risk of error.

It is significant that, during the Second Reading debate on 29 November, the House was unanimous in its appreciation of, and praise for, palliative care specialists. It seems strange that their expertise should not be considered essential to a terminally ill person’s consideration for an assisted death. When we look at other countries, we see that it is not an exceptional safeguard. South Australia’s Voluntary Assisted Dying Act 2021 specifies:

“Either the coordinating medical practitioner or each consulting medical practitioner must have relevant expertise and experience in the disease, illness or medical condition”—

we are not using that any more—

“expected to cause the death of the person being assessed.”

I urge the Committee to reflect on the South Australia model, which is good in this regard.

I turn to amendment 53, in the name of my hon. Friend the Member for Runnymede and Weybridge, and amendment 275, in the name of the hon. Member for Sunderland Central. The Bill currently requires doctors to discuss “available” palliative care options, but that may limit what patients are told. Amendment 275 would provide that patients should be informed of “all appropriate” palliative care alternatives, even if they are not readily available in their local area. We do not want patients choosing assisted dying simply because of unequal geographic provision of palliative care making them unaware of alternatives that could improve their quality of life.

I would go even further in support of amendment 53, which hits the nail on the head. Fundamentally, we have always said that assisted dying should be available only to people who palliative care cannot help. That is what amendment 53 entails: it states that assisted dying should be available only for people for whom the relevant palliative care is actually an option and, if they decline it, that would be their choice.

Finally, I will speak to amendments 425 and 426 in my name, which express the need for a proper multidisciplinary team at the right stage of the assisted dying process. The hon. Member for Spen Valley has emphasised the importance of multidisciplinary teams, and I welcome everything she said. It is very good to get her agreement, through the amendments that she has tabled, that two doctors working alone are not enough to protect and support every patient. I welcome that recognition.

Amendments to clause 12 attempt to fill this gap by introducing the expertise of a psychiatrist and a social worker, but they do not fulfil the role of a multidisciplinary panel. Rachel Clarke, one of the witnesses who told us to consider multidisciplinary assessments, has written subsequent to the amendments being tabled: “A ‘judge plus’ panel”—there will not actually be a judge, so perhaps we should call it a “lawyer plus” panel—

“is not an MDT…the panel’s scrutiny comes only at the end of the process, not at the beginning, when a patient first asks for the intervention of assisted dying. Yet this is a moment of peak vulnerability.”

We will get on to the question of whether a judicial panel should replace a High Court judge, but I emphasise very strongly that the introduction of this process is not the equivalent of having a proper multidisciplinary team considering the application for an assisted death at the appropriate moment.

As the Association for Palliative Medicine said last week, the Bill

“does not align with the standard multi-professional team…decision-making process used across the health service.”

It said that the panel is too distant from the patient and comes too late in the process. It said that the Bill would be stronger if the initial assessments were

“carried within a multi-professional team model”.

It is at the stage we are debating here—in the initial assessments—that the MDT needs to apply. For the record, if it has not been properly noted before, I also state that when the hon. Member for Spen Valley quoted Dr Sarah Cox on the importance of multidisciplinary teams, Dr Cox was not endorsing clause 12, but explicitly arguing for earlier introduction of the multidisciplinary process.

[Kim Leadbeater]

To be clear on the multidisciplinary approach, the point that I was making in that contribution was that that happens already. We are misrepresenting what goes on in current practice with terminally ill patients if we say that there is not a multidisciplinary approach, as indeed various witnesses told us. It is important to acknowledge that.

[Danny Kruger]

The hon. Lady is absolutely right that that is what witnesses told us, but we need to ensure that it happens in all cases; the purpose of these amendments is to ensure that good practice is universal. In the case of assisted dying, bad practice would be terrible. Of course, good doctors seek the guidance of others and do not operate in isolation, but the Bill would allow them to do so. It is important to ensure that the system lives up to the good practice that she refers to.

Committee members will be glad to hear that I am not going to rehearse the arguments about capacity and coercion, but those concerns are why it is important to have a multidisciplinary team at an early stage. The Committee has rejected all attempts to strengthen the capacity test, but it could at least allow a psychiatrist to have an earlier role in the process of checking for capacity. We heard from multiple witnesses about the importance of doing that, and that is what National Institute for Health and Care Excellence guidance states. As the hon. Lady said, it is good practice, so as Professor House said in his evidence to us, it would not be “a terribly radical thing” to do it.

On coercion, as the social worker Jess Carrington wrote to us:

“The only people who are comprehensively trained to recognise signs of abuse, in particular, coercive control, are social workers.”

According to research by Dr David Ross, doctors suspect less than 5% of cases of elder abuse. I will not rehearse the arguments around coercion, but I hope that the Committee will note that the only way—or the best way; it will not be foolproof—to ensure that coercion is spotted is by having a social worker at the very beginning of the process.

I think that is enough from me, Mr Efford—I am sure you agree.

[Sean Woodcock (Banbury) (Lab)]

I rise to speak to amendments 108, 343 and 344. I am delighted that the promoter of the Bill, my hon. Friend the Member for Spen Valley, has said that she accepts amendment 108, which was tabled by my hon. Friend the Member for East Thanet. It would require a doctor who was having an initial conversation with a person about assisted dying to “offer” to refer them to a palliative medical specialist. That would give the patient a chance to discuss end of life matters in depth with somebody who has the necessary expertise.

We have spent much time in previous sittings on palliative care options, and there was some understandable concern about removing autonomy from those looking for assisted dying. I hope that amendment 108 strips away that concern, because it is about offering, not mandating, more information. When we are talking about autonomy, I think that all Committee members would agree that anybody making an autonomous choice could only benefit from more information, rather than suffer as a result of it.

The Bill says that when a doctor has an initial conversation with a person about assisted dying, they should explain and discuss

“any available palliative, hospice or other care, including symptom management and psychological support.”

The amendment aims to ensure that the patient has access to the best available information to make a decision about what they do next. It would act as a safeguard to prevent people from choosing assisted dying because they did not have a chance to have a thorough and accurate discussion about the care options available to them.

As I said, several people were concerned about autonomy, and providing people with the opportunity to meet a specialist. The written evidence from Hospice UK explains that there are currently wide misunderstandings about hospice care at societal level. It says:

“Implementation of assisted dying without care given to public awareness about palliative care is likely to worsen individuals’ ability to make decisions regarding their end of life. People will need access to information about the services and support available to them.”

That reminds the Committee that terminally ill people at the end of their life often may not know the options available to them. I am sure that every Member in the room wants to avoid that situation, and the option of a discussion with a specialist aims to ease some of that fear and provide accurate information.

In order to make palliative and hospice care a genuine choice, it is important that patients with concerns are able to speak to someone who can answer all their questions and offer accurate information. Marie Curie’s written evidence says:

“There must be clear recognition within the Terminally Ill Adults (End of Life) Bill that genuine choice at the end of life cannot exist unless dying people are able to choose to receive high quality palliative and end of life care”.

Unfortunately, we know that the state of palliative care in this country is not yet of evenly accessible quality. The amendment would not solve that problem—there is quite a lot of work to do in that regard—but it would at least improve the Bill. It would give every patient the option of a discussion about palliative medicine and would make some ground on access. We all want to ensure that those with terminal illnesses are given good support and confidence in their decision at the end of their lives. Amendment 108 would do that, and would give people the opportunity of a real, informed choice, which is why I am delighted that the Bill’s promoter, my hon. Friend the Member for Spen Valley, has agreed to it.

My hon. Friend the Member for Shipley, who tabled amendments 343 and 344, has a distinguished record in policymaking in health and social care. She served as chief analyst and director of quality and strategy at the Department of Health. Both amendments are very thoughtful, and we would do well to adopt them. It would be helpful to explain what they would do before I set out why I think that hon. Members should vote for them. Amendment 343 would change clause 4(4), on page 2, which reads:

“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must explain to and discuss with that person—

(a) the person’s diagnosis and prognosis”.

If the amendment were made, subsection (4)(a), on line 28, would go on to read

“, including any relevant probabilities and uncertainties surrounding the person’s diagnosis and prognosis.”

Amendment 344 would change paragraph (b) on the next line, which says that the doctor must discuss with the patient

“any treatment available and the likely effect of it”.

If the amendment were made, paragraph (b) would go on to read

“, including the risks and benefits of such treatment, potential side effects, and the impact of the treatment on the person’s quality and length of life.”

Like amendment 108, amendments 343 and 344 are both intended to improve the quality of information that patients receive when they have their initial discussion about assisted dying. The first amendment addresses what many of the expert witnesses have identified as a key problem with the Bill. Clause 2 requires a doctor to have prognosed that

“the person’s death…can reasonably be expected within 6 months.”

I will not go over the various arguments that we have already had in Committee about that, but many of the very senior doctors who gave evidence to the Committee have said that it is extremely hard for medical professionals to give a prognosis with such assurance.

The Marie Curie palliative care research department at University College London also submitted written evidence, numbered TIAB 39. Those experts said:

“The Bill’s requirement for a prognosis of death within 6 months could lead to significant errors, where individuals either receive assisted dying prematurely or are denied it when desired. The variability in prognostic accuracy, especially for non-cancer illnesses, may exacerbate inequities in patient care.”

They went on to say:

“We also question how the term “reasonably” will be interpreted by doctors, and this is likely to vary between doctors, but also by the same doctor with different patients”.

The Marie Curie palliative care research department also said that predicting someone’s death “too soon” can result in early palliative care, and that such early care is

“not a harm in the same sense as might be implied in the context of assisted dying.”

--- Later in debate ---

[Dr Opher]

As far as I see, under the Bill there is an initial discussion when a patient who is requesting assisted dying goes to see a medical practitioner. It does not specify what type of practitioner, which is good because it means they can ask either the oncologist or the general practitioner. That initial discussion is with a doctor, and then the doctor will refer for the first declaration, or they may do the first declaration themselves. That is how the Bill is set out, but the general practitioner will have had specialist opinions on the patient. They would not just say, “Well, maybe you’ve got less than six months to live—I don’t really know, but let’s have a guess.” This will be based on informed information from a specialist.

[Danny Kruger]

I do not want to labour the point, but does the hon. Member not acknowledge the Bill does not require that at the moment? He is saying that it will happen. Why will it happen—just because the doctors do their job well? Does he recognise there is no obligation to have this wide consultation with other specialists under the Bill? The doctor could do just as he has described and take a decision on their own.

[Dr Opher]

Again, this is a really interesting part of the Bill. If a doctor is routinely giving prognoses of six months where that is not appropriate, they will come up against the General Medical Council for being poor doctors, and the regulation around poor doctors is within the medical profession. If it is proven that someone has given a diagnosis that they cannot back up in any way, they would then be subject to their own professional standards. That is one of the things here: we cannot go through this Bill and specify the medical requirements at every stage, because that comes under a different format, which is called the General Medical Council. If someone has given a prognosis of six months or less, and if that is clearly inaccurate and would be contested by other doctors, they would be brought before the General Medical Council.

--- Later in debate ---

[Dr Opher]

Again, I bring my hon. Friend back to the fact that this is a Bill in law, and what we have to guide us as doctors is the General Medical Council, which sets standards for doctors. That is how we do it. If we are hemmed in by legal matters, we can break the law without being aware of it, if we are not careful. If too many legal parameters are set around medical consultations, the patient will get less good care because the doctor will not be free to offer it. I can see that my hon. Friend does not agree with that, but it is the case.

[Danny Kruger]

The hon. Gentleman is praying in aid the General Medical Council as if it is some sort of effective backstop. He says that the guidance does not need to be in the Bill because it is there hovering over doctors anyway, but the Bill makes explicit reference to GMC guidance—some of it is in there. If he objects to our suggestion to include the full GMC guidance in the communication that should be had, why does he support the presence of some of the guidance that doctors should give? The Bill does not include what the GMC requires: uncertainties about diagnosis or prognosis. Why not include the full GMC guidance in the Bill, seeing as we are including some of it already?

[Dr Opher]

I just do not think it will strengthen the Bill. I thank you for your intervention. It is a moot point.

--- Later in debate ---

My hon. Friend the Member for Stroud made some valid points. I do not feel that amendment 285 undermines what he said; I think his points actually strengthen the argument for the amendment, which would put the detail on the face of the Bill and would clarify a great deal. I do not expect it to tie us up in legal proceedings or to bring the fear of legal proceedings to doctors. As he said, the fear of being pulled up by the General Medical Council if they do something wrong already exists for doctors every day.

[Danny Kruger]

I am afraid the situation is even worse, because the fact is that under the Bill they will not be liable for mistakes made in pursuit of the scheme set out in the Bill. They will be exempt. They are indemnified against civil liabilities for malpractice in the course of their job. It is only guidance, and GMC guidance specifies that breaking the guidance is not itself necessarily considered a serious matter. The provisions are not strong enough at all.

[Naz Shah]

The hon. Member makes a valid point. That brings us to a very important question: do we wait for something to have happened? In this instance, people will have died.

If we were considering kidneys, for example, and the issue of consent, it would require somebody independent. It needs a specialist. We come back to the point about specialisms: whether they relate to diagnosis, coercion, the care pathway, palliative care or the drugs that bring a person’s life to an end, which we will discuss later, these are specialisms. I know that later my hon. Friend the Member for Spen Valley will speak to her amendment about the panel, which is intended to require expertise. That is what amendment 285 speaks to, and I hope hon. Members will support it.

Amendment 286 would set out the requirements for the co-ordinating doctor and ensure that the standards are upheld throughout the process of assessment, so that the patient and clinician have the highest levels of advice available. Even though the co-ordinating doctor might already have sought the advice of specialists as part of their assessment, the purpose of having an independent doctor is to assess the patient without preconceptions influenced by the co-ordinating doctor’s decision-making process. It is therefore important for the clinician to have access to the same level of advice to inform their clinical decision making.

In medical practice, should a second opinion be sought, the person providing that second opinion might consult a range of sources to establish an opinion. This measure would therefore be in line with normal medical practice. I hope that hon. Members will support the amendments.

--- Later in debate ---

Amendment 183 would enable us to mirror that provision in the Bill. It would achieve the strengthening that I sought on Second Reading, by ensuring that a preliminary discussion must include explanation and discussion of the person’s diagnosis, prognosis, any treatment available and its likely effect, as well as all appropriate palliative, hospice or other care, including symptom management and psychological support.

[Danny Kruger]

Will the hon. Lady give way?

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

Danny Kruger Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

I completely agree with what the hon. Gentleman is saying about the importance of getting the training right, but even if the training were right it might not be robust enough. The point was made earlier in the debate that there is a clause towards the end of the Bill about codes of practice that specifies that medical professionals must have regard for a code of practice that “may” be set out by the Secretary of State. Does he agree that that is a very thin defence to rely on? We are not talking about anything in primary or secondary legislation; it will be in a code of practice that may be laid down by the Secretary of State with no obligation or legal liability for a doctor to follow it. We are talking about some layers down from what needs to be in the Bill in terms of the assessments that should be conducted.

[Sojan Joseph]

I agree. As part of the code of practice, professionals are expected to complete the training that has been outlined already, but I am not confident that that is actually happening. Saying that there will be training does not reassure me that it will be robust enough.

--- Later in debate ---

[Lewis Atkinson (Sunderland Central) (Lab)]

I was not intending to, but I will speak very briefly to follow my hon. Friend the Member for Ipswich. I agree that what is set out in amendment 50 is entirely sensible and I support such provisions. However, I will not vote for it, and I want to explain why.

We will go down a very difficult route if we set out the regulation in primary legislation for every individual area of medical practice in this country. We do not have an equivalent version for how doctors should talk to their cancer patient and what information they should provide. We do not have the equivalent in various other sensitive acts, such as the Abortion Act 1967, the Human Fertilisation and Embryology Act 2008 and so on. The reason is that we rely, as set out in statute, on regulation through the General Medical Council.

I want to read into the record some of the existing General Medical Council guidance for doctors on giving information to patients. Of course, this covers any doctor-patient interaction, and it would apply in this case as well:

“The information you give patients

10. You must give patients the information they want or need to make a decision.

This will usually include:

a. diagnosis and prognosis

b. uncertainties about the diagnosis or prognosis, including options for further investigation…

c. options for treating or managing the condition, including the option to take no action

d. the nature of each option, what would be involved, and the desired outcome

e. the potential benefits, risks of harm, uncertainties about and likelihood of success for each option, including the option to take no action.”

That is already set out by the General Medical Council.

[Danny Kruger]

The hon. Gentleman is making an important point about the obligations on doctors to communicate the range of options that patients have, and we are going to discuss that more precisely when we consider the next clause, but his suggestion that this should be treated just like any other medical treatment is surely contradicted by clause 4(1), which specifically disapplies the Montgomery ruling, which I think he is relying on there. That ruling specifies that doctors must communicate all available options to patients. In clause 4(1), the doctor is not obliged to communicate this particular option. Does the hon. Gentleman accept that it is already acknowledged in the Bill that assisted dying is not the same as all other medical treatments and it does not have to be communicated in the same way?

[The Chair]

Order. Can we please keep interventions as short as possible?

--- Later in debate ---

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Mrs Harris. As usual, my remarks will focus on the legal and practical impact of amendments, to assist Members in their consideration.

This set of amendments seeks to change the way in which capacity is determined. As drafted, the Bill requires that a terminally ill person must have capacity to make a decision to end their own life before they meet the conditions for accessing assisted dying. Capacity in the Bill is determined in accordance with the Mental Capacity Act 2005, which presumes capacity unless it is established to the contrary. Amendment 322 would reverse the presumption of capacity and, in effect, establish a presumption of incapacity.

It may be helpful to the Committee if I set out the Government’s understanding of both the Mental Capacity Act and the implications for the Bill. Section 1 of the Act sets out several guiding principles, including that a person must be assumed to have capacity unless it is established that they lack capacity. Section 3 sets out a description of the factors that demonstrate that a person is unable to make a decision for themselves: that the person is unable to understand the information relevant to the decision; unable to retain that information; unable to use or weigh that information as part of the process of making the decision; or unable to communicate their decision. This inability must be because of an impairment or disturbance of the functioning of their mind or brain.

Turning to the Bill, at each stage of the process an assessment of capacity would be required. This assessment of capacity, in accordance with the Mental Capacity Act, is separate to the considerations of whether a person holds a clear, settled and informed wish to end their own life, which is also required by the Bill.

Amendment 322 would disapply section 1(3) of the Mental Capacity Act, which is the principle that a person would not be treated as lacking capacity unless all practicable steps had been taken to help them to make a decision. This could create challenges for practitioners who have experience using the Mental Capacity Act, as they would need to apply a new approach.

Amendment 49 seeks to apply a consistent approach to the burden of proof when assessing a terminally ill person’s capacity for assisted dying. The Mental Capacity Act has two evidential tests. In court proceedings to determine capacity, the balance of probabilities test applies. When care or treatment is given to someone on the basis that they lack capacity, there is protection from liability if there is a reasonable belief that the person lacks capacity and the intervention is in the person’s best interest. The amendment would diverge from this evidential approach. It would also have implications for the workforce. Requiring doctors who have experience in applying the reasonable belief test to instead apply a balance of probabilities test for assessing capacity would likely make the current established approach more complex and potentially less safe.

Amendment 50 seeks to specify certain matters that the person must be assessed as being able to understand in order for a determination to be made that they have capacity. Under the Mental Capacity Act, when a capacity assessment is carried out, the assessor must determine the salient information that the person needs to understand, retain and use or weigh based on the circumstances of the case. The amendment would diverge from this approach, both by specifying in statute the information to be understood and by including the requirement only to understand the information, not to retain, use or weigh it. The Committee may wish to consider whether that would in some respects weaken the test.

Amendment 50 might create two legally distinct frameworks for decision making that doctors would be expected to use. Again, this may introduce additional complexity for those undertaking these assessments.

[Danny Kruger]

As I understand it, the objection to the amendment is on the basis that it sets up an alternative framework for other healthcare decisions. Is it the Minister’s view that assisted dying is a healthcare treatment?

[Stephen Kinnock]

We are talking about the holistic nature of the engagement between patients and medical specialists. In some cases that is for treatment, and in others it is for the withdrawal of treatment. The answer to the hon. Gentleman’s question is that what we are talking about here—the two distinct legal frameworks— relates both to treatment and the withdrawal of treatment. This Bill fits into that category, in the sense that it is part of the engagement and conversation between a patient and a medical practitioner.

[Danny Kruger]

I am not talking about the withdrawal of treatment, which I recognise is covered by the same legal framework—particularly the Mental Capacity Act—as other healthcare interventions, because that concerns the withdrawal of a healthcare intervention. Is it the Government’s view that the administration of assisted dying under this Bill would be a healthcare treatment?

[Stephen Kinnock]

It is the view of the Government that this is a new piece of legislation that introduces a new type of engagement between somebody who meets the conditions and criteria set out in clause 1, and medical practitioners and other experts, as set out in the Bill. I am not quite sure what the hon. Gentleman is driving at. I do not know whether he wants to get into a discussion about the definition of the word “treatment”. It is absolutely clear that this Bill introduces changes into the system, including a new part of the conversation that would take place between medical practitioners and patients who have less than six months to live.

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[Stephen Kinnock]

That goes back to what I was saying earlier, which is that this is fundamentally a judgment call: do we make the system more robust, resilient and effective by adding more complexity and bringing in a new and parallel legislative framework, or is it best to work with a legislative framework that is well established and well understood by practitioners, and then to enhance that through regulations and training? It is the Government’s view that the latter is a more effective way of doing this legislation, but I accept that the hon. Members who have tabled this group of amendments clearly would not agree with that analysis.

[Danny Kruger]

Last intervention, I promise—maybe. I do not mean it is my last intervention ever, just in this speech—no, in this minute!

An amendment was tabled by the hon. Member for Richmond Park that would have replaced clause 3 altogether, and that would have been understood as a parallel system—which would be appropriate because we are discussing a new order of intervention, which I will not call a medical treatment—but we are not doing that. We are accepting the Mental Capacity Act. It is not a parallel process: it is one that builds on the foundation of the Mental Capacity Act in a way that already happens in other respects, as the Minister has described. It is a question of putting it in legislation or into a code of practice. I recognise his arguments, but will he please acknowledge that we are proposing to build on the Mental Capacity Act and enhance it in legislation to make it safer?

[Stephen Kinnock]

I thank the hon. Member for the last intervention that he will ever make on me.

The Government’s analysis of this group of amendments is that, to varying degrees, they would not add clarity; they would add more complexity, partly because they would either create a parallel legal framework or put new elements into the mix that would create operational challenges for practitioners. That is the Government’s fundamental analysis, but it is a finely balanced judgment and I absolutely accept the hon. Member’s argument.

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[Dr Tidball]

I am sorry, Mrs Harris, but I may have risen too soon. I want to speak to amendment 339, but I would first like to hear from my hon. Friend the Member for Bexleyheath and Crayford, who tabled it.

[Danny Kruger]

I rise to speak to new clause 6, in the name of my hon. Friend the Member for Solihull West and Shirley; to amendment 368, in the name of my right hon. Friend the Member for East Hampshire; to amendment 270, in the name of my right hon. Friend the Member for South West Wiltshire (Dr Murrison); and to amendment 278, in the name of the hon. Member for Wells and Mendip Hills. I will canter through them as quickly as I can.

My concern about new clause 6, which specifies that an advance directive would be inapplicable in the case of assisted dying, is that, as we discussed briefly at a previous sitting, advance directives are currently about the refusal of treatment. That is what they exist to do. Under the new clause, as in the Mental Capacity Act 2005, the effect of an advance decision would be that

“the specified treatment is not to be carried out or continued”.

However, under clause 18, the doctor must be satisfied at the time that the lethal substance is provided that the patient has capacity. I do not think that the new clause is necessary; it is otiose or even nonsensical, because the Bill already assumes that the patient has capacity at the very end. [Interruption.] The hon. Member for Spen Valley agrees with that point. I invite my hon. Friend the Member for Solihull West and Shirley to consider whether he wants to press new clause 6 at all.

On amendment 368, which relates to people with Down’s syndrome, I hear what my right hon. Friend the Member for North West Hampshire says. I strongly agree with him; I will make a couple of points and then respond to his suggestion.

I look forward to the points from the hon. Member for Spen Valley. I do not say this in a carping spirit, but it is relevant that the National Down Syndrome Policy Group opened its submission with a series of complaints about the process. The group feels that the consultation process has been rushed: we have not had the usual 12 to 16-week public consultation. It talks about limited professional and affected population engagement in the course of the drafting of the Bill, and a lack of accessible consultation materials; I mention that not to revisit the debate that we had about the process, but because it is a bad start. In the group’s mind, it is a harbinger of how the Bill might operate, and I understand why it thinks that.

The fact is that in our society we have persistent and entrenched discrimination against people with learning disabilities, particularly people with Down’s syndrome. There is a fundamental assumption that is too widely shared that the lives of people with Down’s are worth less than others’. One sees that, I am afraid to say, in the prevalence of prenatal screening and termination of Down’s babies. Yet we know from research that the lives of people with Down’s are as fulfilling, joyful, positive and constructive as everybody else’s. The most marvellous fact is that 99% of people with Down’s syndrome say that they are happy with their life, which I am sure is more than on this Committee and probably more than in the general population.

As a society, we serially misunderstand and degrade the value of people with Down’s syndrome. They are victims of the system, particularly in healthcare. People with intellectual disabilities died at rates three to four times higher than the general population during the covid crisis, often with inappropriately applied “do not resuscitate” orders put on them. The representation from the National Down Syndrome Policy Group was signed by 50 organisations, all representing people with Down’s syndrome, so it is pretty widespread.

Expert advice is that it is very difficult to spot coercion when dealing with people with Down’s syndrome. It is very difficult to ensure that one is getting informed consent. A point that has been made, in particular by the Down’s Syndrome Research Foundation, is that a discussion with someone with Down’s can often feel to them as if a suggestion is being made. That is particularly relevant to the whole question of a doctor’s suggestion, which we will come on to—well, we are on it now. Certainly the whole matter of how a person with Down’s syndrome receives information needs to be taken into account in any work that is done.

[Kim Leadbeater]

The hon. Member is making an important point. As someone with friends who have children with Down’s who, as he says, absolutely have very fulfilling lives, I hear every word that he is saying. Will he take a commitment from me back to those organisations? I commit personally to meeting them, perhaps alongside the right hon. Members for East Hampshire and for North West Hampshire, at a time convenient to them.

[Danny Kruger]

I am grateful to the hon. Lady and am sure that that will be welcomed. It does rather go back to the point that the organisations made at the outset, which is that they wish they had had more consultation earlier on, but I understand why that was not possible in all cases.

[Sean Woodcock (Banbury) (Lab)]

In oral evidence, Fazilet Hadi stated in answer to a direct question from me that she felt that disabled people had not been listened to properly. Will the hon. Member comment on that?

[Danny Kruger]

I am afraid that that seems to be the strong impression that many groups have.

I will quote quickly from a submission that we have received from someone at the National Down Syndrome Policy Group, Fionn Crombie Angus. I am not sure whether Fionn has Down’s syndrome, or is perhaps a parent, but the point is a striking one, which we have not heard enough:

“I do feel very sorry for the people who are suffering, but I think the people left behind, the relatives, will be scarred for life if they help people die. That is the main reason why I do not want the Assisted dying Bill to become law.”

That is not specifically relevant, because we are not discussing whether the whole thing should happen, but it strikes me that there, from a member of the Down’s community, we have a point that goes to the heart of our discussion on the Bill: it is not all about the individual who is seeking an assisted death. More people are involved in the decision.

I made a point in an earlier debate about relational autonomy, which is very significant. That particularly applies to this group of people, who will be making decisions in the context of their family and the people around them, including the doctor who is talking to them. That is why it is particularly important to have a wider set of expertise and advice around people with Down’s.

My concern is that Bill, as drafted, thanks to the inclusion of clause 3 and its reference to the Mental Capacity Act, will assume consent and support people with Down’s receiving this intervention. It would have been best if we had accepted the amendments tabled by my hon. Friend the Member for Reigate and the hon. Member for Bexleyheath and Crayford to reverse the burden of proof. Failing that, we need to ensure that the job is done properly. Amendment 368, tabled by my right hon. Friend the Member for East Hampshire, would address that point.

Given the real concern that we have all discussed about the application of the Mental Capacity Act, it is important to have real expertise, time and attention on behalf of Down’s people with the role of an independent advocate. In particular, that should be someone who has expertise in end-of-life decisions for people with Down’s syndrome, which will be a small group of experts, so we might have to end up widening that, I am sorry to say. We need people with proper expertise.

I think the point that my right hon. Friend the Member for North West Hampshire made about the interaction of the Bill with the Down Syndrome Act 2022 was absolutely right. My understanding is that he is right that it applies to authorities, but it strikes me that the purpose of the amendment 368 would be to insist that the provisions of the Act apply in the case of individuals as well.

My right hon. Friend may be right that there could be complications, so it would be good to hear whether the Minister agrees with him that we should take this topic away, with the hon. Member for Spen Valley, and see whether the provisions in the amendment can be introduced at a later stage of the Bill or in statutory guidance. However, I would want to hear explicitly from the Minister that he is confident that what my right hon. Friend the Member for East Hampshire was trying to do when he tabled the amendment will be reflected properly at a later stage of the Bill. On that basis, I am happy not to press the amendment to a vote unless others feel strongly that we should proceed.

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[Dr Simon Opher (Stroud) (Lab)]

Surely the hon. Member is describing exactly why we need the Bill. If they are given a diagnosis, at that point they can apply for assisted death. We know that there are statutory time limits built in, which I believe will take us to at least 21 days from the diagnosis. The danger is suicide in patients, which is what we are trying to avoid. Approximately 600 patients with terminal illness commit suicide in this country each year, and the Bill will prevent that by allowing them to apply for assisted death.

[Danny Kruger]

I hope that the hon. Member is not suggesting that all 600 would be averted by the Bill. He might be right that some would be, and I recognise that. However, the purpose of amendment 270 is to ensure that people who might be suicidal receive an assessment, whether they are inclined to apply for assisted death, if it is legal, or to take their own life in an unassisted way. If they expressed a wish under the clauses of the Bill to have an assisted death, they would have proper psychosocial assessment and proper steps would be taken to ask, if we are prepared to make this distinction, “Is it just that they are suicidal and not wanting an assisted death?” I find the distinction difficult to parse logically, but if that is the distinction that we are making, let us put it into the Bill and ensure that people are properly cared for in that very dangerous time after they get a terrible diagnosis.

I would like to quote from the written evidence that we received from a member of the Pathfinders Neuromuscular Alliance, which is a user-led charity for those with muscle-weakening conditions such as muscular dystrophy. This person said:

“I’ve been there, I’ve wanted to die, and I’ve been in the position where I would take that option if it was given to me”—

not if it was not. Interestingly, he would have taken that option if it was given to him, rather than suggesting that he was going to take his own life anyway. The quote continues,

“but looking back I can see I was depressed and now I’m so glad that I didn’t take that option.”

At the moment, the Bill does not require anyone to explore these psychosocial factors, and although the person can be referred to a psychiatrist—and, if we go on to accept the amendment, we would ensure that they must be if the doctor concludes that there is doubt—I do want to make a point about referrals. There is an assumption that the doctor will refer the person to a psychiatrist, but that will only happen if they have done their assessment well. We are assuming that they will do the assessment well, but we have heard repeatedly that such assessments are often not done well. I welcome the coming amendment—amendment 6—that says that if the doctor concludes that there is doubt about capacity, they “must” refer. That would be a step forward, but it is not sufficient. Even the psychiatrist will only answer the question, “Is this person able to make a decision?” That does not address any of these other factors.

In Oregon—we refer often to Oregon, and although this Bill is supposed to be the safest in the world, it is not as safe as Oregon in this respect—the doctors may refer the patient for counselling if the patient

“may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment”.

To conclude on this point, psychosocial care is fundamental to good end-of-life care. Members of the Committee have said that palliative care and assisted dying can complement each other; this assessment should be part of that picture, and it needs to come before the first declaration, because once somebody has signed that declaration they are already on the pathway—and there will not be an obligation on them to receive palliative care advice either, because we rejected that amendment. Amendment 270 provides for people’s needs to be met at the first opportunity.

Lastly, on the question of doctor-initiated conversations, I quote Professor Brassington, who submitted evidence to the Committee:

“In normal medical practice, the patient approaches the medic with a problem, and the medic suggests possible courses of action, not all of which would have been considered by the patient. The patient permits further action. But it is implicit that the practitioner who makes the suggestions thinks them good, and the patient is entitled to think that the practitioner endorses them all.”

In a normal scenario, the doctor would think about what is good for the patient. To raise an option is to endorse and encourage it, perhaps as one among a number of other options. It is to suggest that this is a good option—it might not be the one the doctor thinks is the best, but it is a good option for the patient; otherwise, they would not raise it. They can only make a recommendation for options that they consider would be appropriate to the situation.

[Kim Leadbeater]

On that point, I fundamentally disagree, although I will stand corrected by medical colleagues. I do not think that the doctor in this instance is making any suggestion; what they have the responsibility to do is to lay out the options, but it is up to the patient to choose. I would imagine—again, I will stand corrected by medical colleagues—that that is standard practice.

[Danny Kruger]

This is an important debate to have, because the clear implication of a doctor making a recommendation is that this option would be good for the patient. It is one of many—

[Kim Leadbeater]

It is not a recommendation.

[Danny Kruger]

Indeed, it is not a recommendation; but in laying out this option for the patient, the doctor is clearly communicating that it might be the right thing for the patient to do and that it might address their needs. If the suggestion is that they are making a suggestion that might not be good for the patient, then that is of serious concern to us, is it not? The clear implication of current law—with reference specifically to Montgomery v. Lanarkshire Health Board, which determines that we have patient-led medicine in this country now—is that a doctor is obliged to set out all the options that he or she thinks might be appropriate to the case. That goes back to the question about whether we regard assisted dying as a healthcare intervention, but if we do regard it as one, then if it is suggested, it is because it might be the right thing for the patient to do. Implicitly, there is a suggestion that it could be the right option for the patient.

It is interesting that clause 4(1) disapplies Montgomery and says that a doctor is not obliged to make this suggestion. That poses the question: is it therefore a treatment at all?

[Kit Malthouse]

I am not sure my hon. Friend is entirely right. My understanding is that under law and medical ethics, doctors have to discuss all courses of action with someone, even if they believe a course of treatment might have adverse consequences. It is not that they can restrict themselves; they have to give someone the full range. That sits behind informed consent, surely.

[Danny Kruger]

Certainly, there are adverse consequences for all sorts of treatments, but putting assisted dying on the table and making it clear that this is an option for the patient can only be done, morally and legally, if the doctor thinks that it may be an appropriate treatment or intervention for the patient. Otherwise, if we are suggesting that the doctor might not think that this is a good thing for the patient to be doing, it is a serious breach of medical ethics for them to suggest it. It is one or the other. Either this a good thing for a doctor to suggest, or it is not.

[Juliet Campbell (Broxtowe) (Lab)]

A very quick question: does the hon. Member agree that the weight of a doctor’s words weighs heavily on patients?

[Danny Kruger]

I am absolutely sure that is right, and I am grateful to the hon. Lady for making that important point. For anybody, but particularly for the vulnerable and those in distress, as people are towards the end of their life, for those who have had a terrible diagnosis, and for those who feel a burden and recognise that the coming months might not be good for them or their family, of course the statement of this option has an implication—even if it is presented as neutrally as possible. It might well be received as a communication that the doctor is actually trying to say, “You are going to have a terrible death”, but does not want to say it out loud. It could be taken in all sorts of ways by patients.

[Dr Opher]

That is actually not right. In a medical consultation, a doctor gives a number of different options. A small example is that I might suggest to someone that there is an option of taking an antidepressant. Now, it is the patient’s choice as to whether they do that. My role is to give every option that is available, and to encourage and help the patient to make their own personal choice. That is a very basic tenet of clinical care.

[Danny Kruger]

I recognise that, but I repeat that by offering antidepressants, he is suggesting to his patients that it may well be the right thing for them to do. He puts in front of his patients a menu of options, with a degree of advice according to his expertise, but if assisted dying is on the menu, that is because assisted dying is regarded as something, as it were, that is healthy to eat. He would not put something on the menu that he did not think they should take. Everything on the menu is edible.

[Kit Malthouse]

Maybe we have a different interpretation of the Montgomery case, but my interpretation is that it shifted the duty of doctors from being based on what a reasonable doctor should disclose to what a reasonable patient would want to know. In these circumstances, in which someone has a terminal diagnosis and only a few months to go, I guess we are saying in the Bill that a reasonable patient would want to know about this option.

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[Danny Kruger]

I think my hon. Friend is suggesting that a doctor should suggest assisted dying as an option in every case, because if he is suggesting that a reasonable patient would want to know this towards the end of their life, he is saying that every dying patient should be told, “What about assisted dying?” That is a very concerning suggestion. The question is: how would a doctor decide when or when not to make this suggestion?

I will go back to Montgomery and make this point as clearly as I can. The Bill accepts that assisted dying is not an ordinary medical treatment, which is why I pressed the Minister on this question. Clause 4(1) disapplies the Montgomery case law, which requires, as part of informed consent, that the patient be informed of all appropriate options. Having conceded that assisted dying is not an ordinary medical treatment, the objection to a prohibition on doctors raising it makes little sense.

It is true that having such a prohibition would be unlike any other medical treatment, but the Bill has already crossed the Rubicon of saying that assisted dying is different from all other medical treatments, because in clause 4(1) it says that doctors are not obliged to offer it. It is either the case that they must offer it or they must not. There is no grey area. If they do not have to suggest it in any case, that implies that assisted dying is unnecessary in all cases and there no cases where it should be used. I would like to hear from any Member who has an answer to this: in what circumstances might it be appropriate for a doctor to suggest assisted dying?

[Dr Tidball]

Does the hon. Member therefore disagree with the British Medical Association, whose evidence to the Committee has said specifically:

“We support the Bill’s balanced position such that there is no prohibition on raising assisted dying with eligible patients where, in their professional judgement, the doctor considers this to be appropriate—but there is also no duty to raise it”.

The implication is that the Bill gets that balance correct.

[Danny Kruger]

I am grateful to the hon. Member for highlighting that. I disagree with the BMA—I think that its idea of balance is actually an incoherence in the Bill. I note that the BMA elsewhere has suggested that assisted dying should not be regarded as a normal healthcare option or treatment. It is itself a victim of the confusion that is reflected in the Bill about whether or not this is healthcare. As I said, the disapplication of Montgomery in clause 4(1) suggests that it is not actually healthcare treatment and should not be managed in the same way as everything else.

[Jake Richards (Rother Valley) (Lab)]

I have been listening to the argument in some detail. Is there not a danger here of trying to translate the dry words of clause 4 to the conversations that naturally happen between clinicians and patients? Subsection (3) attempts to give some discretion as to when, how and whether to raise this prospect, instead of making it mandatory on any prognosis of terminality.

[Danny Kruger]

I recognise that it is an attempt to give maximum leeway to doctors. I think that is dangerous and puts doctors in a very difficult position. The BMA made the point that it is appropriate to enable doctors to raise this option as if it were just another treatment, even though it has also said it is not just another treatment.

I would challenge the BMA with the Medical Defence Union, which is the union that supports doctors in litigation. It points out, more correctly, that this is the worst of all worlds for doctors because they would be liable to complaints in either situation: if they do not raise it, a complaint can be made against them for not having done so; and if they do raise it, a complaint can be made against them on those grounds. We are being extremely unclear by leaving it entirely up to doctors. As I have said, it is not clear to me the circumstances in which it would be appropriate for a doctor to suggest an assisted death to somebody who has not raised it themselves. I would very much like to hear somebody tell me what those circumstances might be and to paint a scenario for us in which it is appropriate.

[Naz Shah]

Surely all medical codes of practice explicitly or implicitly bar doctors from raising courses of action that they believe could unquestionably harm a patient. Does it therefore not follow that doctors only raise courses of action for patients that they believe will not unquestionably harm them, even if they believe some courses of action are more likely to be in the patient’s best interests?

[Danny Kruger]

That is absolutely right. Either this is a medical treatment—in which it should be obligatory for a doctor presented with a patient who qualifies under the Bill and has the symptoms that we are talking about to say, “By the way, there is also this option”, which is what I think my right hon. Friend the Member for North West Hampshire is suggesting—or it is not a healthcare treatment at all. Clause 4(1) states that they do not have to raise the subject, in which case they should not raise it, because to raise it is to put it on a par with other healthcare options and therefore implicitly, or indeed pretty explicitly, to say, “This is an option that might be good for you”, which is an enormous communication to make.

I go back once again to the difference between this and withdrawing treatment. I have to say this so many times because it is so important: this is not equivalent to withdrawing treatment because this is not specific to the illness being treated. A person can have a treatment or not, and that will address the condition that they are suffering from. The termination of life does not address someone’s symptoms, treatment, condition or illness; it kills them. It is a different order of intervention. I do not think it is a healthcare treatment at all, and it should not be treated as such.

[Kim Leadbeater]

The hon. Member makes a valid point about the circumstances in which this option would be considered a valid choice for a patient. That brings us back to the fact that we are talking about someone who is going to die; the question is how they are going to die. It is not someone who is going to get better—they are not going to wake up and find that everything is going to be fine. This is about what that death looks like.

Pat Malone—one of our witnesses in oral evidence—had a brother who had seen his father die under circumstances so horrible that he had begged his children to help him die. Then the brother got the same condition and could see what his death could look like. Does the hon. Member not value the choice that assisted dying would give that patient to take back control of what their death could look like, with their loved ones around them? This is a very real situation for, sadly, lots of people, and could be where that choice could be valid.

[Danny Kruger]

I was not asking for cases in which it might be the right choice for somebody—I recognise the argument there. I am asking when it might be appropriate for a doctor to suggest it. In the case of the Malone family, if this law had been enforced, they would have requested it themselves. Again, I want to know under what circumstances it would be best for the patient—in their interests—for an assisted death to be suggested to them by a doctor, when they had not raised it themselves. Under what circumstances might that happen?

[Kim Leadbeater]

The concept of a suggestion is also not particularly accurate—it is a choice, in the same way that the other options are a choice. Families could only ask for this conversation if they knew about it, and while we are all living and breathing this Bill at the moment, even if it does come to fruition and the law is changed, there will be people who do not know about this option. Surely, it would not be informed consent for a person to suffer a horrible death if they were not told about this option.

[Danny Kruger]

On the suggestion that people will not know that this option is on the table, who are we talking about in those circumstances? I suggest we would be talking about people who are extremely marginalised, and I would be very concerned about a doctor suggesting an option to them. There may be a tiny number of people who would not know that this option is legal, but I am afraid it would be very widely known the minute that it is law.

[Kim Leadbeater]

rose—

[Danny Kruger]

I will certainly give way in a moment. An enormous number of people will be dragged into the scope of the Bill by suggestions being made to the vulnerable people that we are concerned about. I really do invite her to answer this as honestly as she can; does she not accept that being given this option by a doctor—given the doctor’s position of power and the vulnerable position that the patient is in—could well be interpreted as a suggestion that this might be a good thing for them to do? Does she does not recognise that?

[The Chair]

Order. We should not be addressing Members in that way.

[Danny Kruger]

You are absolutely right, Mrs Harris; I am inviting her hon. Lady to intervene as she wishes to, but I recognise she does not have to do that at all.

[The Chair]

You should be addressing the Chair.

[Danny Kruger]

I recognise that. I should certainly address you, Mrs Harris.

[Dr Opher]

I would like to make a speech that answers some of these points, but I will intervene if that is more appropriate. What would the hon. Gentleman prefer?

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[The Chair]

Order. That is not a decision for Mr Kruger. If you wish to make a speech, if you indicate to me as the Chair, I will call you at an appropriate time. If you wish to make interventions, please do so, but could you keep them short? Have you decided which option you prefer—at your convenience?

[Danny Kruger]

I will decline the hon. Gentleman’s intervention—how about that? I will make his decision for him. Would that be acceptable? I look forward to his speech.

Let me wind up to the general satisfaction of the Committee with a couple of points about some other amendments. On amendment 278, which was moved by the hon. Member for Chesham and Amersham and tabled by the hon. Member for Wells and Mendip Hills—it is a very south and south-west debate—the suggestion is that if somebody has indicated in advance that they do not wish to have a conversation about assisted dying, the doctor will not raise it. That sounds welcome, but I am in fact afraid in practice that I think that this is quite simply an invitation to raise the idea if a declaration has not been made.

The absence of a declaration could well be interpreted as a willingness to have that conversation. Practically, how would it work? Would patients be informed of the need to make a declaration in advance of a doctor’s appointment? Would we all have to think, “Goodness, if I don’t make this declaration, the doctor might be suggesting an assisted death to me”? Should we all do that? Suddenly, we are having discussions about assisted death even before we see a doctor. All over the Mendip hills, people will be worrying that before they see a doctor, they had better sign a declaration.

To make a serious point, although the Bill is frequently framed as a choice only for the people who might take it, with no impact on the rest of society, my great concern is that it will actually impose an obligation on every family with a frail, elderly person in it. It will impose an obligation on all of us as we approach our end to consider whether we should take this option or not. It is not neutral in its effect on everybody. My concern is that amendment 278 will bring that home and make it even more explicitly required that we all consider whether we want to have an assisted death well before the time comes.

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

I think there is already broad consensus in this country: people would like the option of assisted dying. Polling shows overwhelming support for it. I accept that there are disagreements about what the option looks like, but this is not something that people have never thought about before and would suddenly pop into their minds; they have been talking about it for decades and decades. What would the hon. Gentleman say to that?

[Danny Kruger]

The hon. Gentleman is right that people are well aware of this topic, and they would be quickly aware of the option if the Bill became law. Without getting into the question of the bogus polling that claims to demonstrate public support, I would simply observe—[Interruption.] Well, it demonstrates support for something called “assisted dying”, but if we drill into the data and ask people explicitly what they mean, we find that they often mean palliative care. The more that people understand what is proposed in this Bill, the less they like it. Actually, other polling shows that there is a majority against the provisions of this Bill, but let us not banter polling around here. We make the law, and we are not responsive to polls, are we?

There is a challenge about making advance notices, and my strong suggestion is that we do not support amendment 278. I had better leave it there; I think we have all had enough of me—me included.

[Juliet Campbell]

Amendment 124 would prevent a registered medical practitioner from discussing the provision of assistance under the Bill unless it is first raised by the person themselves. This is very similar to another discussion we have had. The reason for my amendment is that the doctor will be suggesting, offering or endorsing assisted dying as a treatment pathway—and that would be new—and the patient may take that as a recommendation or endorsement, which could impede their freedom to autonomously choose assisted death.

Another reason I tabled the amendment is that the Bill risks exacerbating the existing pervasive health inequalities. I am very concerned that biases, both conscious and unconscious, have the potential to significantly impact the treatment pathways offered to people, particularly those who fall under the nine protected characteristics of the Equality Act 2010. Medical practitioners have the potential to influence the treatment pathways offered to people, particularly those from those backgrounds, and I therefore see no reason why assisted dying would be offered as a treatment pathway.

I was thinking of the following example. Under maternity services, we also have abortion services. If someone presented themselves to a doctor and said that they were in the early stages of pregnancy, they would not be offered abortion as an option; they would be asked, “Do you want to have your baby at home or at a hospital? Would you like shared care between your GP and the hospital?” They would not be asked, “Would you like an abortion?” because that is not part of the pathway. For that to happen, the person would go to the doctor and say, “I am pregnant and I would not like to have this baby.” It is therefore important that the individual first approaches the doctor or clinician and says, “I am interested in an assisted death” or “I would like an assisted death.” Assisted dying should not be a treatment option, even if it is part of end-of-life care.

The doctor’s position is one of knowledge and expertise that far exceeds that of their patient, and that places them in a position of power and influence over their patient. Given that power imbalance, the doctor’s suggestion seems like a recommendation. If an individual chooses assisted death because it feels like a recommendation, that decision is no longer autonomous.

I will quote a GP, Dr Hannah Denno, who put in some written evidence. She cited her role as a GP as being one that needs her patients to take her words as guidance:

“I believe that in my role as a GP, to make such a suggestion”—

choosing assisted death, for example—

“would put pressure on some patients to accept it. At a time of vulnerability many patients are very sensitive to any suggestions raised by a health care professional.”

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[Danny Kruger]

I am grateful to my hon. Friend for setting it out so clearly, but I would like a little more clarity because I do not fully understand. My understanding from the Bill is that at the moment of the administration of the fatal drugs—the final act, as it is called—the administering doctor has to be confident of capacity. Were a person no longer conscious at that point, the doctor would not be able to proceed.

[Dr Shastri-Hurst]

The purpose of new clause 6 is to get clarity on that issue, because of the interplay with section 26 of the Mental Capacity Act, which states that if a patient

“has made an advance decision which is...valid, and...applicable to a treatment...the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.”

I am not suggesting for a moment that seeking an assisted death is conventional treatment in the normal sense, but there will be patients who seek an assisted death and have palliative care treatment along the way, so there could be a technical scenario whereby the palliative care treatment is withdrawn for the assisted death to take place.

There is an element of mischief in my probing new clause, but it is to air the matter in debate. In truth, intervention there are a variety of options with any withdrawal of treatment or any treatment. I wanted that on the record. I have had assurances from the hon. Member for Spen Valley that that is clearly not the Bill’s intention—in many ways, I am arguing against my own new clause. Of course, this is a distinct scenario from an advance statement—the much more proactive step of, “These are the treatments or options that I would like if I lose capacity at a future date”—which has no legal footing. An advance directive, in comparison, is very much concentrated on the withdrawal of care. I do not propose to divide the Committee on the new clause; I merely tabled it so that this could be discussed.

Let me turn to amendments 8 and 124. There has been much discussion and worthy debate on the position of Montgomery, which takes me back to my days as a pupil barrister grappling with issues of consent. I fear that we may be going down a rabbit hole in discussing Montgomery in this context. I agree with my hon. Friend the Member for East Wiltshire that an assisted death is not typical medical treatment in the normal sense of those words; it is a wider holistic medical intervention. Therefore, my understanding is that Montgomery would not apply in those circumstances.

However, some of the principles around Montgomery way well have justification. My concern about the amendments is that while it is quite right that there should be no requirement to instigate those discussions, it would be equally wrong not to allow the flexibility to have that conversation in appropriate circumstances. The reality of clinical practice is that there are consultations within consultations. A patient who comes to a surgery to see their doctor may not feel able to articulate what they truly feel. They may give subtle hints, which doctors pick up during the course of a long career—to put it in lay terms, doctors read between the lines.

There is interplay with the principles of Montgomery, which is clear that a doctor should discuss issues where a reasonable person in the patient’s position would attach significance to them or the doctor is, or should reasonably be aware, that that particular patient would attach significance to them. My hon. Friend the Member for East Wilshire asked for examples of that. There are scenarios where there are subtle hints from a patient who has been given a terminal diagnosis. They ask, “What is the implication of this terminal diagnosis? How am I going to die, doctor?” The doctor says, “There are variety of ways in which this may manifest itself” and goes through them. Some of them may be more tolerable to the patient than others.

--- Later in debate ---

Under the proposed amendment, the doctor would not be able to raise assisted death at that point, which is an option that is available if the law passes. It may not be an option that is palatable to some people, even after the debate—people may have, for very valid reasons, a moral objection or a principled objection to anybody undergoing an assisted death—but once it is on the statute book, it is an option for individuals. The danger is that we place our clinicians in an unenviable position. We cannot force them to have that conversation, but if the patient clearly indicates that they want it—they have indicated that they want to know the options available to them—where does that leave the clinician?

[Danny Kruger]

I am grateful to my hon. Friend for setting out the scenario so clearly. To summarise, he is suggesting that if a patient with bowel cancer says to their doctor, “How am I going to die?”, the doctor would say, “Well, one possibility is that you will die very badly, vomiting faeces,” to which the patient says, “My goodness, I’d never thought of that. What can we do about it?”, to which the doctor should say, “Well, there’s always assisted dying.” I summarise and condense the conversation, but that is the conversation that my hon. Friend is envisaging, is it not?

[Dr Shastri-Hurst]

My hon. Friend summarises a much more complicated conversation; I think he distils it down to an over-simplistic representation of how the conversation would go. A patient says, “I hadn’t envisaged that I may die while vomiting up faeces. What could we do?” The clinician would go through a variety of options that would be available in that scenario, but that would include, potentially, having a discussion about assisted death, as that would be one way of avoiding that situation coming across the hills.

This is the issue I have particular concern about. In the scenario where that conversation arises, a patient has very clearly indicated that they want to know all the options available for how they would manage their death, and the doctor feels that is a cue, quite understandably and, in my view, rightly, to have a wider conversation that involves assisted death, along with other options, because he or she believes that the patient has indicated that that is what they wish. If we say that a doctor cannot have that conversation in any circumstances, we open up the clinician to the accusation, perhaps from a relative, who says, “Hang on a minute, doctor. My relative didn’t raise that with you. You raised it with them.”

These are very subtle and carefully balanced conversations. I understand where the amendment comes from, but without trusting in the judgment of clinicians, who know their patients well, we are setting them up to fail. We are setting the system up to be more clandestine. We are going to prevent what are very genuine and important conversations from taking place, because people are too scared of the operational framework that would be imposed on them. In those circumstances, we would put forward a Bill that does not function as intended. For those reasons, I will not support amendments 8 and 124.

--- Later in debate ---

[Naz Shah]

I am not sure that the amendment would be that kind of gag clause, so I disagree. If a patient says, “Give me all the options to bring an end to this,” the judgment of the doctor could be that assisted dying is an option. If that is the case, perhaps we need to look to the Government’s and Ministers’ wash-up process. When we are tidying up this Bill, I am sure that there will be plenty of opportunities for the Government to put in the significant words that safeguard patients. That is my feeling, but I thank my hon. Friend for his intervention.

[Danny Kruger]

The clear implication of the amendment is that if the patient requests to know what can be done to end their life, that is an invitation to raise the option of assisted dying; if they ask the doctor about what can be done to deal with the pain, symptoms and illness, they should be offered information on that. I am afraid that it comes back to the distinction between its being a healthcare option and not being a healthcare option. Does the hon. Lady agree that the evidence from Australia is clear that the minute there is a law like this, there will be challenges to the safeguards? Each safeguard will be seen as a barrier to a human right and a barrier to access. That is what the Australians told us.

[Naz Shah]

I agree that that is what the evidence shows us, and there are many concerns in other jurisdictions as well. I will come back to that distinction.

--- Later in debate ---

[Sarah Olney (Richmond Park) (LD)]

I wish to speak briefly to amendment 270, in the name of the right hon. Member for South West Wiltshire, to which I have put my name. It is about the really important issue of assessing suicidal intent as part of the assessment as to whether somebody has capacity to seek an assisted death. It is a really important point. The Bill expressly sets out that the person seeking an assisted death should have

“a clear, settled and informed wish to end their own life,”.

Amendment 270 seeks to establish that the wish cannot be clear or settled if there is any doubt about whether the person has a suicidal intention instead of seeking an assisted death on the basis that they have a terminal illness. In its current form, the Bill does not require a structured assessment of whether a patient is experiencing remediable suicidal risk factors, such as treatable depression, external pressures or suicidal ideation, before assisted dying is discussed.

In the oral evidence, Dr Mulholland said that most people with depression, anxiety and other mental health problems “would have capacity” under the Mental Capacity Act because it would be presumed. It is not necessarily an obstruction to people being referred for anything. It is an important point that someone can have depression and that it can lead them to have suicidal thoughts, but under the Mental Capacity Act they would still be assessed as having capacity to decide that they wanted an assisted death.

What is really important is that we have, over some years in this country, developed a suicide prevention strategy. I am sure that every Member in this room has had constituents approach them, as I certainly have, about family members who have committed suicide, where they were able to identify factors that made that suicide preventable. That is why it is so important that the suicide prevention strategy has been developed and continues to be developed, and why leading figures associated with that strategy—and with suicide prevention more widely—are concerned that a Bill for assisted dying may undermine suicide prevention strategies. We should take every care to prevent that in this Bill.

The current UK suicide prevention strategy cites early intervention as a priority to implement tangible actions aiming to reduce the risk factors of suicide. In line with that strategy, amendment 270 provides early intervention that aims to identify the symptoms of suicidality in a patient before the initial discussion about assisted dying can take place. At the bare minimum, someone who is severely suicidal will not be allowed to enter into conversations about receiving an assisted death.

It is important to reflect that suicidal ideation is not the same as a settled wish to die. Evidence shows that when mental health issues are treated, many patients no longer seek to end their life by suicide. Dr Price, in the oral evidence, said that 20% of terminally ill patients experienced depression, which is strongly associated with the wish to hasten death. When depression is identified and treated, the wish to die often diminishes. It is so important to distinguish and make provision for those people who are experiencing a wish to die as suicidal ideation, as opposed to the

“clear, settled and informed wish”

specified in the Bill.

Research from the Office for National Statistics, King’s College London and the University of Manchester suggests that people diagnosed with a physical terminal illness are at an elevated risk of death by suicide, because of an increase in the psychological distress that can lead to severe depression in many patients, but data from the study shows that it is a more pronounced risk of suicide in the first six months after diagnosis or first treatment and, on average, suicide rates in the first year after a terminal diagnosis were 21.6%. Of course, it is important to reflect on the fact that a diagnosis of a terminal illness can take place some years in advance of the actual prognosis that the person’s death may occur. We are looking at a group of people who are within six months of their death as far as can be established by what is, as we know, uncertain prognosis—yet the incidence of suicide among those with a terminal illness is much more weighted towards those who have just received a diagnosis. These, of course, are not the same group of people; there may well be overlap, but they are definitively not the same.

Evidence on the gov.uk website suggests that

“over half of men aged 40 to 54 who died by suicide had a physical health condition.”

We know that having a physical health condition or any kind of terminal illness has an impact, and that evidence demonstrates the impact that poor physical health has on mental wellbeing. We know that thereDr Louis Appleby, a psychiatrist who leads the national suicide prevention strategy for England and directs the national confidential inquiry into suicide, has expressed concerns that the Bill fundamentally undermines the basis of the suicide prevention strategy. Identifying and diagnosing capacity and mental disorders are easy to put down in writing, but in practice it is much harder for professionals to make a correct judgment straightaway. Where we do not want someone to die, we intervene by offering mental health support, crisis services and what we hope is a comprehensive suicide prevention strategy, but for those who qualify under this Bill, instead of that suite of support, we allow them to progress straight into discussion to end their life.

It is really important that we have had a debate today about how the discussion should be initiated and the appropriate way to do that, but what is important about amendment 270 is that it takes into account the specific factor of suicidal ideation. It would mean that whatever the outcome of the decision about how the conversation should be initiated, the possibility that the person wishes to commit suicide is nevertheless taken into account.

[Danny Kruger]

The hon. Lady has just made a very important point. Does she agree that there will be profound awkwardness for a medic? In a hospital, when somebody says they want to die, they are at the moment referred to the mental health team—basically to be put on suicide watch—but under the Bill, without this provision, the obligation would be to say, “Well, maybe that’s the right thing to do,” and refer them to the assisted suicide team. What is being proposed through this amendment, as I understand it, is more or less to do both.

[Sarah Olney]

That is absolutely right. I think it becomes quite challenging for medical professionals when they are presented with a patient who expresses a wish to die: is this a suicidal intent or is it a clear, settled and informed wish to end their life under the provisions of the Bill? That is why it is really, really important that the possibility of suicidal intent is ruled out, as set out in amendment 270, which I support.

--- Later in debate ---

[Dr Opher]

I completely agree. Interestingly, I am on a journey here. To begin with, I thought these were good amendments. I thought that we must not introduce certain things—the doctor being a powerful person and so on. I then asked a lot of my colleagues, and they said, “No, no—we’ve got to clarify the law. We do not want this blurring of the law.” I have actually moved in the other direction, and I think it is essential that we do not bring in these amendments. As my hon. Friends said, the BMA has support the subject being raised and there have been changes to the law in Victoria because the gag clause simply does not work. We need to protect patients and, in my opinion, these amendments are not a good way of doing that. The hon. Member for Solihull West and Shirley made such a compelling argument against those amendments, so I will not go on about them.

On Amendment 278, I actually agree with the Member for East Wiltshire, but probably for different reasons. Again, if we introduce the amendment, if the doctor does not see that a patient has said that they do not want assisted dying and they bring it up, the Bill will potentially criminalise their behaviour. I feel that would not work and it would complicate the law.

I agree with amendments 319 and 320, tabled by my hon. Friend the Member for Bexleyheath and Crayford, which concern age. They would be a good and—alongside his amendment 339—functional change to the Bill.

Amendment 270 is about psychological assessment. As far as I can read in the Bill, as part of the panel process, which we have not yet discussed, there will be a psychological and psychiatric assessment of the patient. Also, when assessing someone with a terminal illness, most doctors will assess their mental health.

[Danny Kruger]

It is very important that we do have psychiatrists involved. In that sense, the addition of the panel may be welcome, although I regret that it is replacing the judicial stage—but, crucially, it comes right at the end of the process, and as I understand it, there will be no obligation on the panel to meet the patient. That is in no way a psychiatric assessment, let alone one at the right moment.

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

Danny Kruger Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

The hon. Gentleman is making a very important point, and he picks up the observation by the hon. Member for Bradford West that there is a link, through the Equality Act, with disability. It is absolutely right that we address that. Does he agree that the way to do so is not to accept amendment 181 tabled by the hon. Member for Spen Valley, which would retain the dangerous words “only” and “for the avoidance of doubt”, but to accept amendment 11, which would exclude those words and ensure that someone could not get an assisted death by reason of disability or mental illness? Because of that concern, perhaps we need to table a further amendment to exclude the Equality Act from the operation of this clause, and I await the Chair’s ruling on whether that is possible at this stage. Amendment 181 does not refer to the Equality Act, although the Bill does, so we should follow that point. Rather than accepting that amendment, which would not move us forward, we should accept amendment 11. I hope that that is clear and that it might satisfy the hon. Gentleman’s concern.

[Daniel Francis]

I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain.

We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.

--- Later in debate ---

[Dr Simon Opher (Stroud) (Lab)]

I would like to make a short comment. It is very important that the Committee does not get too hung up on anorexia, because the Bill is very clear about what is excluded. Deprivation of nutrition is always reversible. Someone who is anorexic and about to die would go into multi-organ failure and be unconscious and unable to give any sort of consent. Before that, the nutritional deprivation is reversible and therefore not covered under the Bill.

[Danny Kruger]

I just wanted the hon. Gentleman to comment on the reality in our NHS at the moment that people are described as terminally ill with anorexia. They are given the label of being terminally ill and put on palliative care pathways because it is assumed that their condition is not reversible. Doctors today, in this country, are concluding that people with eating disorders are going to die and are treating them accordingly. Is he aware of that, and how does it affect his comments?

[Dr Opher]

I am not aware of that. I believe that this is always reversible until a person goes into the absolute terminal stage of multi-organ failure. Before that, we can reverse nutritional deprivation. I do not accept that point, and I think it is important that we look at the Bill in all its detail. I think it has enough safeguards to exclude someone with anorexia.

[The Minister for Care (Stephen Kinnock)]

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

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

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

[Danny Kruger]

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

[Stephen Kinnock]

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

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

[Danny Kruger]

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

[Stephen Kinnock]

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

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

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

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

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

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

--- Later in debate ---

[Kim Leadbeater]

My apologies; I am speaking to amendments 399, 400 and 401. I will be happy to come back to that point at the appropriate time, but I first want to finish my comments on those amendments.

As I have said, the hon. Member for East Wiltshire has done a good job this morning of improving the clarity of the issue. That shows that the Committee is doing its job and working effectively. I am therefore open to supporting those amendments.

[Danny Kruger]

I am delighted to hear it. I am grateful to the hon. Lady and to other hon. Members who have indicated their sympathy for the amendment. I look forward to the Division and to the Minister’s decision.

May I follow up on a point made by the hon. Member for Bradford West? I do not know whether the hon. Member for Spen Valley would like to intervene to help me understand the point. Amendment 181 would redraft clause 3(2) to make it clear that a person does not qualify as terminally ill

“only because they are a person with a disability or mental disorder”.

It would add to clause 3(2) the following additional sentence:

“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if…the person meets the conditions in paragraphs (a) and (b)”.

Does the hon. Member for Spen Valley agree that that will essentially mean that the clause does nothing? It confirms the terms of eligibility set out earlier in the Bill, and confirms that a person would still be eligible to receive an assisted death if they had conditions that were a consequence of a mental disorder or a disability. If she feels like intervening on me, I would like her to help me understand what that additional sentence adds. To my mind, it negates the purpose of the clause.

[Dr Tidball]

I stand here as a disabled woman. Under the Bill, as a disabled woman, I would not —by reason only of being a disabled woman—be eligible to have access to assisted dying. The amendment clarifies that I would not be eligible only through being a woman who has a disability. However, if I develop a condition that means that I have a terminal illness, leaving me with only six months left to live, I would be permitted to have that choice. It is right, I think, that I should have that choice. As I said in my Second Reading speech, this is about giving people access to a good death and living a good death. This is about giving that choice, where they choose to make it, to disabled people, while building in sufficient safeguards so that this is not something pressed upon them—

--- Later in debate ---

[Danny Kruger]

I am grateful, Mr Dowd. I recognise the force of what the hon. Member for Penistone and Stocksbridge is saying. To be clear, the amendments that I am supporting would not deny disabled people any of the other rights that are being awarded in the Bill. She is absolutely right that a disabled person with a terminal illness would qualify just as much as someone who was not disabled. That is absolutely right.

The purpose of the amendment is to ensure that people whose illness is a direct consequence of a mental disorder in particular would not be eligible. The reference to disability is because of the confusion, which I expect the hon. Member for Spen Valley recognises in current law and guidance, about where the distinction between disability and terminal illness lies. That is our concern. The purpose of the amendment is to ensure that people would not be deemed as eligible for an assisted death in consequence of disability or mental illness. I know that is what the hon. Lady is trying to do with the amendment, and with the clause that it amends, so we are on the same page. Our concern is that, by including the words “For the avoidance of doubt” and the word “only”, we will be leaving quite a large loophole, through which, I am afraid to say, some vulnerable people might fall.

I look forward to the Division on the amendments. We have not been able to discuss them all in close detail, but I am grateful to Members for the debate that we have had.

Amendment 399 agreed to.

[Juliet Campbell (Broxtowe) (Lab)]

I beg to move amendment 123, in clause 2, page 1, line 23, leave out “an inevitably” and insert “a typically”.

This amendment changes the definition of what it is to be terminally ill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.

--- Later in debate ---

[Naz Shah]

Absolutely not. That is not the point that I am making. Eating disorders are reversible, but it has been found that where this kind of legislation has been enacted, across the globe, somebody who has anorexia and decides not to eat then falls within the scope of assisted dying because it becomes a terminal illness.

[Danny Kruger]

I do not want to cut off the hon. Lady in full flow, but I want to echo her points. The hon. Member for Stroud has made his point before and we have had an exchange on it. There is quite a lot of research, to which I refer him, that shows how people in the UK, being treated by the NHS, are having diagnoses of terminal anorexia. It is happening. I refer him to Professor Agnes Ayton, the campaigner Hope Virgo and the eating disorders all-party parliamentary group in this place, which is looking at that. It seems bizarre to us, because of course someone can resume eating, but the fact is that anorexia is treated as a terminal illness in parts of the NHS today.

[Naz Shah]

I concur with the hon. Member’s remarks.

--- Later in debate ---

[Danny Kruger]

I will be as quick as I can be. I recognise the powerful contributions that have been made on a number of the amendments. I pay tribute to the hon. Member for Broxtowe, who made a very interesting speech in support of her amendment 123. I was struck by her point that we should do what we can to reflect the reality of clinical situations in people’s lives. I very much respect the power of the arguments she made. My concern is that by changing “inevitably” to “typically”, her amendment, although it might reflect reality more closely, would widen the scope of eligibility. I am afraid I will not support her amendment, but she made an important speech about how things actually work.

I will speak briefly in support of amendment 282 in the name of the hon. Member for York Central (Rachael Maskell), and of amendments 48 and 402 in the name of the hon. Member for Bradford West. At the end, I will refer quickly to the amendments in the names of the hon. Member for Harrogate and Knaresborough and of my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer). All those amendments, with exception of the last ones, fit the Bill to the campaign—they make the Bill more accurately applicable to the people whom the campaigners have been campaigning for and whom everyone has the most sympathy with.

Amendment 282 in the name of the hon. Member for York Central would restrict eligibility to people with a one-month diagnosis only. I stress that the amendment is probing and I do not propose to press it to a vote on her behalf. She tabled it and I am speaking to it to make the point that, if we are serious about the Bill being for people who are dying and not for people who are not—for people at the very end of their life, as we hear so often—we need to be much stricter about the period of prognosis. I will not repeat points that have been made by other hon. Members, but the fact is that the six-month test is literally as good as tossing a coin. It has a less than 50% accuracy. In particular for advanced cancers and neurological conditions, accuracy is very low.

[Jack Abbott]

A line has to be drawn in the sand somewhere. Will the hon. Member define what an adequate timeline would look like for him to be satisfied?

[Danny Kruger]

The hon. Member invites me to suggest that I think it would be possible to draw a safe safeguard. I do not. I think that one month is better than six months, because with one month we can have more accuracy and doctors are more genuinely right when they say that someone is close to death at that point, while six months is much more inaccurate and 12 months is notoriously inaccurate. If we restrict the Bill by using a time limit, that limit should be as close to death as possible in my view.

[Kim Leadbeater]

Does the hon. Member agree that if we were to reduce it to one month, there would be absolutely no way to have the robust process set out in the Bill—or, indeed, I would argue, to have any sort of robust process?

[Danny Kruger]

I accept that, which is why amendment 282 is probing only. It is trying to demonstrate the point. I recognise that even the expedited process is likely to take up to a month to get through, so that would be difficult. Nevertheless, if our intention is to restrict this to people who are literally in their last days, which is frequently what we hear, I think it would be appropriate to restrict the time.

[Naz Shah]

The hon. Member talks about the amendment being probing. Does he know why we went for six months? Was it was based on research? I am not sure whether he is aware or can help me understand that.

[Danny Kruger]

I am not. I think we have allowed six months to creep into common legal parlance because of the Social Security Contributions and Benefits Act 1992; we now recognise in law that it is possible to have certain rights and entitlements on the basis of a six-month prognosis. I presume that is the basis of it. It does feel like a reasonable period, and I understand the rationale for it, but given the difficulty of prognosis and the intense seriousness of what we are doing, I think it is inappropriate and dangerous.

Another way of achieving greater safety—less precise but perhaps more generous to people who want an assisted death—is to tighten the definition of terminal illness to mean those whom doctors think it is reasonably certain, rather than reasonably expected, will die within six months. That is the intent of amendment 48 tabled the hon. Member for Bradford West. The amendment also insists that the condition is terminal even with “all recommended treatment”, so that somebody could not make themselves eligible by refusing treatment. That is a very important point that the hon. Lady is trying to insist on.

By the way, that does not mean—and I hope people will not conclude that it does—that someone is required to have every treatment that might be possible, including invasive and unpleasant chemotherapy. The point is that it would have to be treatment recommended by the doctor: if the doctor recommends it, then it is appropriate. A doctor might be offering chemotherapy, but they would not be recommending it in all circumstances.

For the avoidance of doubt—an important phrase— I think that the hon. Lady’s amendment 402 is very important too. Just in case nutrition is not seen as treatment—perhaps it is arguable that it may not be—it is very important that we specify explicitly that declining food or drink does not qualify someone for an assisted death.

[Naz Shah]

Does the hon. Member agree that one point that is really important in this afternoon’s debate is that a person has a right to refuse treatment, and indeed food and water, if they have capacity, but that malnutrition is practically reversible? The argument has been made by doctors in Oregon around the voluntary stopping of eating and drinking that doctors cannot legally force a person with capacity to eat, and if they refuse food, their condition can be considered irreversible and terminal. That is the crux of the point. Does he agree with me?

[Danny Kruger]

I think so. The hon. Lady is absolutely right that there is this difficult loophole that somebody may have capacity and be refusing food and drink and would therefore potentially be eligible. In the Bill as it stands, we have an expedited process for people whose prognosis is only a month. There, the 14-day waiting period could be reduced to just 48 hours. If a person stopped eating and drinking, their death would almost certainly happen within a month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. It is very important that we recognise that and explicitly exclude it.

I will refer quickly to other jurisdictions where this specific situation occurs and the voluntary stopping of eating and drinking is used to qualify for legal drugs. A peer-reviewed article in the Journal of the American Geriatrics Society discusses this case—it may be the one referred to earlier. The authors noted that if anyone can access VSED—voluntary stopping of eating and drinking—then anyone can qualify for medical assistance in dying. In Colorado, 12 people qualified for assisted suicide based on a diagnosis of severe malnutrition.

The American Clinicians Academy on Medical Aid in Dying, an organisation of doctors who provide assisted suicide, acknowledges this loophole. Its guidance states that

“there is nothing in the letter of the law”

to prevent voluntary stopping of eating and drinking from being used in this way. It adds that that would

“essentially eliminate the criteria of terminal illness,”

because a person could always qualify as having terminal illness if they stopped eating and drinking. That is obviously not what the Bill’s sponsor and drafters wish. I hope they will consider accepting the amendment to close that loophole.

I will not repeat points made very eloquently by my hon. Friend the Member for Reigate, but I echo the need to ensure that the Bill is not for conditions that, although they cannot be reversed by treatment, can nevertheless be controlled or substantially slowed. I will therefore support the amendments in the name of my hon. Friend the Member for South Northamptonshire.

I pay tribute to the hon. Member for Harrogate and Knaresborough and to the people he speaks for in tabling amendment 234. I recognise absolutely that the MND Association has pointed out that the six-month rule would not work for all MND sufferers. It successfully persuaded the last Government to change the rules on benefits in recognition of that point, and its evidence to us, it has requested a clear and workable definition for assisted suicide. It was not very clear on what that would be, and there are practical problems with extending to 12 months, specifically the one we have with six months—the difficulty of prognosis, which would be twice as bad. I also refer to the evidence from Professor Sleeman, who made the point that a non-neurologist would find it particularly difficult to make an accurate 12-month prognosis for MND.

The main reason to object to the principle of the amendment—I appreciate that the hon. Gentleman is not moving it, but it is an important principle to discuss—is that it makes no sense at all to have two different prognosis periods. Of course, we can see where it will go. The fact that the amendment has been tabled and selected, that it is in scope, and that people will support it in this Committee or beyond, or outside Parliament, is evidence of where things go. We saw it very clearly in the evidence we heard from witnesses from Australia, who pointed out that there is no logical reason to have two prognoses—one for cancer and one for neuro-degenerative disorders. Their response was, “Well, let’s make it 12 months for everyone,” and of course that is the way things would go.

I finish with a tribute to the great quixotic effort of my hon. Friend the Member for Runnymede and Weybridge, who is not on the Committee. Runnymede is the home of Magna Carta; the spirit of liberalism lives on in my hon. Friend, a genuine liberal who wants to scrap the period of prognosis altogether, because he genuinely believes in absolute autonomy. I have been trying to make the Bill live up to its claim to be a Bill for safeguarding; he wants it to live up to its claim to be a Bill for autonomy. In principle—in logic—he is absolutely right. If we think that some people should have access to suicide assisted by the state, then why should person A get it and not person B? Needless to say, I disagree with him.

[Lewis Atkinson]

I rise to speak in favour of the current, tightly drawn eligibility criterion of a six-month terminal diagnosis. I agree with my hon. Friend the Member for Bradford West that that was a central plank of the Bill as introduced and as debated across the House on Second Reading. I therefore rise to speak against all the amendments tabled to the clause.

Dying people want to put their affairs in order. That includes thinking about the death that they want and how they want to spend their time with their family. Dying people do not want to die, but they do not have an option to live. I feel that the way we talk about death perhaps has not been fully reflected in the debate we have had on the amendments.

In my mind, the evidence from elsewhere is very clear that those who seek assisted dying seek approval for it, going through the safeguards—significant safeguards, as set out in the Bill—so that they can spend the remaining time with their family, with enhanced feelings of control and autonomy, removing some of the fear that causes them to ask, “What if I will have no way out of inevitable pain?” That does not mean, of course, that people wish to die more quickly. The fact that the Bill sets out a six-month eligibility criterion does not mean that people will rush to end their own lives as soon as it is possible to do so. It means that six months is the threshold at which they can start potentially exploring the options and getting through the onerous—rightly onerous—process of eight different stages of capacity checks, three different stages of approval, multiple doctors and so on, so that they have the option. Indeed, as my hon. Friend the Member for Spen Valley set out earlier, a significant proportion of people who have been approved for assisted dying elsewhere do not take up that option, because their end of life is not painful—and that is fantastic—or can be managed through palliative care. That is something that we would all want. However, knowing that they have the option significantly increases their quality of life, their ability to relax with their families and their ability to spend time with their loved ones.

--- Later in debate ---

Division 9

Question accordingly negatived.

Ayes: 8

Noes: 15

[Danny Kruger]

I beg to move amendment 12, in clause 2, page 2, line 2, at end insert—

“(c) their illness, disease or medical condition is found on a list that the Secretary of State may by regulations specify.”

This amendment would require an illness, disease or medical condition to be specified in regulations that may be made by the Secretary of State to be considered a terminal illness under the Act.

[The Chair]

With this it will be convenient to discuss amendment 13, in clause 2, page 2, line 10, at end insert—

“(4) Regulations under subsection (1)(c) are subject to the affirmative procedure.

(5) The Secretary of State may, where they consider it appropriate, make regulations that expire after twelve months from their being made to include temporary additions to the list under subsection (1)(c).

(6) Regulations under subsection (5) are subject to the negative procedure.”

This amendment is consequential on Amendment 12 and specifies regulations under that amendment must be made by the affirmative procedure. Temporary additions could be made by regulations subject to the negative procedure.

[Danny Kruger]

I will be fairly brief in speaking to the amendments, but they go to the heart of things. We have tried to tighten the Bill by excluding medical conditions from the definition of a terminal illness; I am very pleased that the Committee has accepted that tightening. We have also sought to exclude illnesses that are consequent on mental disorders and disabilities; we have not succeeded with that tightening. We have further sought to tighten the Bill by circumscribing the prognosis period more precisely.

The amendments would tighten the Bill further by explicitly listing the illnesses that qualify. The argument is quite straightforward. The problem that we are trying to address is that, under the Bill, it will be up to doctors and potentially to the court—or a panel, if that is where we go—to decide whether a particular condition is terminal. It would be set by case law and by medical doctors deciding what conditions qualify.

--- Later in debate ---

[Stephen Kinnock]

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

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

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

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

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

[Danny Kruger]

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

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

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

Amendment, by leave, withdrawn.

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

This amendment is consequential on Amendment 399.

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

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

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

Question put, That the amendment be made.

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

Danny Kruger Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Stephen Kinnock]

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

[Danny Kruger (East Wiltshire) (Con)]

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

[Danny Kruger]

Q It does, very helpfully. Can I come back to you quickly? You point out that to suffer is essentially a subjective experience, so it is very difficult for somebody from the outside to determine whether somebody else is suffering to a certain threshold. By that reasoning, it should simply be the case that people who feel that they are suffering intolerably should be eligible. Why do you not think that that is what we should have in the law?

Dr Fellingham: In our law, in Western Australia, one of our eligibility criteria is that a person is suffering intolerably, in a manner that they consider intolerable, and that we have taken all reasonable steps to alleviate. The important thing about suffering is that it is a personal experience. It is not mine to judge as a clinician; it is mine to delicately and expertly tease out of a patient and to attempt to mitigate and treat to the best of my ability. Yes, suffering absolutely is what the patient says it is, and these laws are designed to honour individual patients who are dying. They are not designed for us as practitioners or clinicians looking in from the outside; they are designed to be supportive of an individual patient’s illness journey, and only they can know what the experience of that is.

Dr McLaren: It is a very good question, Mr Kruger. I think one of the distinctions is where the point of hope is and where the point of no return may be for that suffering. If you were to say that patients or people may apply for this or self-confess suffering in the absence of an end-of-life condition, that leads to questions about whether it applies to a 21-year-old with a decompensated mood disorder that could be treated or improved. When we are talking about patients within the last six months of their life, that suffering is very hard to come back from in the time that is given to them. It is about that recognition of the point of difference between hope for the future and a different type of hope—hope for improvement in symptoms or control of the situation, but not for physical improvement or a return to normal function or living. That is the real difference between legislating purely on the basis of suffering, versus in the context of suffering that will not get significantly better.

The point is that the line must be drawn somewhere. We have seen patients who have been ineligible under our laws where we have found immense suffering, and that is a difficult space to navigate in its own right, but those cases are going to happen regardless of where the line is drawn, and it needs to be in a place where people are comfortable to navigate on one side or the other. That is where the clinical education comes into the process, in terms of how we best manage that, recognise the suffering in the individual, try to make things better and work hand in hand with palliative care and other colleagues to try to improve symptoms for the patients who are not eligible under these laws.

Dr Mewett: As a palliative care physician, I spend all my professional life addressing people’s suffering in the context of an advanced, progressing, incurable illness. Palliative care, of course, approaches that from a range of different angles. I see VAD—assisted dying, voluntary —as an end-of-life choice among a range of end-of-life choices that people may or may not make. A minority of our patients will take that choice and have some control. They require and should have excellent palliative care up to the time that they die, whichever way they decide to die.

I think we should understand that despite the best palliative care in the world, there are still patients who suffer uncontrollably, unremittingly and intolerably. I believe that it is that small minority of patients who should have a legal option to take control of that stage when it is irreparable. It is not incompatible with palliative care; it is part of palliative care and an end-of-life choice, and not the philosophy of care that palliative care is.

--- Later in debate ---

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

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

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

[The Chair]

I call Simon Opher.

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

Danny Kruger Excerpts

Wednesday 29th January 2025 Public Bill Committees

[Stephen Kinnock]

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

[Danny Kruger (East Wiltshire) (Con)]

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

[Danny Kruger]

Q It does, very helpfully. Can I come back to you quickly? You point out that to suffer is essentially a subjective experience, so it is very difficult for somebody from the outside to determine whether somebody else is suffering to a certain threshold. By that reasoning, it should simply be the case that people who feel that they are suffering intolerably should be eligible. Why do you not think that that is what we should have in the law?

Dr Fellingham: In our law, in Western Australia, one of our eligibility criteria is that a person is suffering intolerably, in a manner that they consider intolerable, and that we have taken all reasonable steps to alleviate. The important thing about suffering is that it is a personal experience. It is not mine to judge as a clinician; it is mine to delicately and expertly tease out of a patient and to attempt to mitigate and treat to the best of my ability. Yes, suffering absolutely is what the patient says it is, and these laws are designed to honour individual patients who are dying. They are not designed for us as practitioners or clinicians looking in from the outside; they are designed to be supportive of an individual patient’s illness journey, and only they can know what the experience of that is.

Dr McLaren: It is a very good question, Mr Kruger. I think one of the distinctions is where the point of hope is and where the point of no return may be for that suffering. If you were to say that patients or people may apply for this or self-confess suffering in the absence of an end-of-life condition, that leads to questions about whether it applies to a 21-year-old with a decompensated mood disorder that could be treated or improved. When we are talking about patients within the last six months of their life, that suffering is very hard to come back from in the time that is given to them. It is about that recognition of the point of difference between hope for the future and a different type of hope—hope for improvement in symptoms or control of the situation, but not for physical improvement or a return to normal function or living. That is the real difference between legislating purely on the basis of suffering, versus in the context of suffering that will not get significantly better.

The point is that the line must be drawn somewhere. We have seen patients who have been ineligible under our laws where we have found immense suffering, and that is a difficult space to navigate in its own right, but those cases are going to happen regardless of where the line is drawn, and it needs to be in a place where people are comfortable to navigate on one side or the other. That is where the clinical education comes into the process, in terms of how we best manage that, recognise the suffering in the individual, try to make things better and work hand in hand with palliative care and other colleagues to try to improve symptoms for the patients who are not eligible under these laws.

Dr Mewett: As a palliative care physician, I spend all my professional life addressing people’s suffering in the context of an advanced, progressing, incurable illness. Palliative care, of course, approaches that from a range of different angles. I see VAD—assisted dying, voluntary —as an end-of-life choice among a range of end-of-life choices that people may or may not make. A minority of our patients will take that choice and have some control. They require and should have excellent palliative care up to the time that they die, whichever way they decide to die.

I think we should understand that despite the best palliative care in the world, there are still patients who suffer uncontrollably, unremittingly and intolerably. I believe that it is that small minority of patients who should have a legal option to take control of that stage when it is irreparable. It is not incompatible with palliative care; it is part of palliative care and an end-of-life choice, and not the philosophy of care that palliative care is.

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[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

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

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

[The Chair]

I call Simon Opher.

Medicines and Healthcare Products Regulatory Agency

Danny Kruger Excerpts

Thursday 16th January 2025 Commons Chamber

[Danny Kruger (East Wiltshire) (Con)]

I will be as quick as I can be, Madam Deputy Speaker. I want to talk about over-prescription and the vaccines. I acknowledge my role as the co-chair and past chair of the beyond pills all-party parliamentary group, which the hon. Member for Stroud (Dr Opher) chairs in this Parliament. I thank the secretariat for the great work it does to support the group.

We have a crisis of over-prescription in our country, with the rates of prescription drugs being given to people going up vertiginously. Prescriptions have doubled over the last 12 years. Nearly 9 million people—one in five adults—are on antidepressants, which is way too high a figure. Many people should never have been put on these drugs—they should have been offered non-chemical alternatives—and they should be supported to withdraw. I very much hope that the MHRA and the Government more widely will heed the calls we are making on the APPG for better training of GPs, better labelling of these drugs and withdrawal services for people who want to come off them.

In addition to social prescribing, which I am sure the hon. Member for Stroud will talk about from his experience, I want to mention the important potential role of digital therapeutics, which are not properly commissioned by the NHS but could be a big part of the answer.

I want to talk briefly about the role of the MHRA in over-prescription, particularly with respect to anti-depressants. We know from evidence, from anecdote and from coroners’ reports that SSRIs—selective serotonin reuptake inhibitors—can cause people to take their own lives. There are dozens of documented cases. The most prominent of those recently has been the tragic case of Thomas Kingston, whom I knew and whose family I have been speaking to since his death. Tom shot himself last February after being put on SSRIs. In fact, he was put on that SSRI after another SSRI caused him to feel absolutely awful, so he was put on two in very quick succession.

The coroner for Gloucestershire, who conducted the inquest, recommended much clearer communication of the risks of these pills, and she is not the first coroner to make that recommendation. I pay tribute to The Times for its campaigning to highlight the fact that so many coroners’ reports have not been heeded by the authorities. I wish they had been, as it might well have saved many lives.

[Esther McVey]

The number of people who have taken their lives after coming off SSRIs shows that it is not a one-off or rare. There are many people, including one of my constituents, aged only 25, who took her life. I congratulate my hon. Friend on raising this issue. What more can we do to raise awareness of the effects of withdrawal from these antidepressants?

[Danny Kruger]

The tragedies that we read and hear about are bringing to light the chronic problem of over-prescription in our society. I am afraid that the MHRA is to blame. A review is under way, but it does not sufficiently recognise the direct harms that these pills can induce in people. I hope that through better labelling and regulation, and a better culture of alternative prescriptions, we can reduce the tragedies that we are so familiar with.

Let me quickly comment, following on from my hon. Friend the Member for Christchurch (Sir Christopher Chope), on the experience of the MHRA during the covid epidemic. The vaccines were developed at a frantic rate. We can be very impressed by the speed of the taskforce and pay tribute to the work of the private sector, particularly our world-leading research base. The Government managed to act at great speed, largely because they bypassed Whitehall. But significant questions remain, which my hon. Friend raised, about whether the vaccines are genuinely safe and effective.

It is right that people ask questions about the data on excess deaths and wonder if there is a connection with the vaccine—that is not inappropriate. Ultimately, there is only one way to answer that question: to have the data. However, we do not have access to that data. The Government hold it and, extraordinarily, they have made it available to the pharmaceutical companies that produce the vaccines, but not to researchers—individual-level death data that shows who was dosed with what vaccines and which of them died.

In a debate in the House last April, and previously in correspondence with Ministers, I clearly and simply asked for that data to be made available to researchers, anonymised as appropriate. The UK Health Security Agency has admitted that the data exists, but has refused to release it, almost unbelievably, because of the risk to the mental health of the relatives of the dead. That begs the question, does the data show a link between the vaccines and those deaths? The information tribunal is due to rule on that matter shortly, and I fervently hope that common sense will prevail and the data can be made available to disprove the link, so that our minds and those of our constituents can be put at rest. There is also a case with the information tribunal about the data held by the MHRA on the vaccines’ safety for pregnant women. Again, the agency has been withholding that data for two years.

Let me finish by observing, in the light of the comments made by hon. Members across the House, that we have a genuine problem with the regulation of the medical industry and of medical products. I very much welcome the appointment of R. F. Kennedy to the role of Health Secretary in the United States. He will shake things up over there. Perhaps the Minister can be our own RFK over here, and bring some genuine transparency to the health system.

--- Later in debate ---

[Alison Bennett (Mid Sussex) (LD)]

I thank the right hon. Member for Tatton (Esther McVey) for bringing forward this really important debate and for her excellent opening speech, which was very informative. In the interests of time, I will keep my remarks brief.

The Medicines and Healthcare products Regulatory Agency is tasked with vital work, and we all agree that it is there to protect and promote public health. As a number of Members have set out, it is concerning that despite the MHRA’s obvious importance, it clearly faces a number of challenges that need to be addressed. The Cumberlege review highlighted a conflict of interests, because the MHRA relies on fee income from pharmaceutical companies; as the hon. Member for Stroud (Dr Opher) said, this is a case of the agency marking its own homework. It is not a great way to set up its funding.

The hon. Member for Dewsbury and Batley (Iqbal Mohamed) made a really important point about Brexit, which is the elephant in the room. As with so many parts of our economy, Brexit caused major disruption to the pharmaceutical industry. Among other things, the loss of the prestigious European Medicines Agency from London to Amsterdam damaged trust in the UK’s pharmaceutical investment space.

[Danny Kruger]

Will the hon. Lady give way?

[Alison Bennett]

In the interests of time, I will not.

Brexit caused significant confusion for companies looking to sell products from Great Britain to Northern Ireland. It has also slowed down the time in which novel medicines and treatments can be approved for use, as pharmaceutical companies have understandably prioritised obtaining a single approval, allowing access to 27 markets via the EMA.

Meanwhile, strict affordability models imposed by the National Institute for Health and Care Excellence mean that companies face a further hurdle before their products can reach patients. Again, that diminishes the attractiveness of the UK market post Brexit. To help address this issue, the MHRA introduced the international recognition procedure a year ago to streamline the authorisation process by incorporating assessments from trusted regulatory partners worldwide, including the EMA. However, that relies on those partners having already approved the products, so UK patients will inevitably still have access to medicines later than people in other countries, including EU member states. When I met representatives of Roche Diagnostics, based in Burgess Hill in my constituency, they told me about the industry’s serious concerns that the additional GB-specific conformity checks required could be prohibitively expensive and lead to significant delays.

As things stand, the forecast is looking gloomy. My Liberal Democrat colleagues and I are committed to addressing these issues head-on, and to helping the MHRA become world leading. First, we are pushing to expand the MHRA’s capacity by halving the time for treatments to reach patients suffering from illnesses such as cancer. Secondly, we encourage the Government to fully implement the recommendations of the Cumberlege review, including on compensation, corrective surgery and psychological support for those who were failed and who suffered from faulty devices and drugs. Thirdly—this is vital—the Government should actively seek a comprehensive mutual recognition agreement with the EMA to promote faster access to new and novel medicines and medical devices. That would reduce red tape, cost and friction, providing hope for those who need access to these lifesaving and life-enhancing medicines and devices.

Hospice and Palliative Care

Danny Kruger Excerpts

Monday 13th January 2025 Commons Chamber

[Danny Kruger (East Wiltshire) (Con)]

I will not focus on assisted dying/assisted suicide this evening, because as the hon. Member for Wimbledon (Mr Kohler) said in a good opening speech, we are all united in this place in our desire to see improvements in the palliative care system, but I feel compelled to make this simple point of fact. Studies and research show that in jurisdictions and countries around the world that have introduced an assisted dying/assisted suicide law, the investment in and the quality of palliative care has declined, relative to those that do not have an assisted dying/assisted suicide law. That is for reasons that are fairly comprehensible. That is a fact. I implore the House: let us fix our palliative care system before we consider opening up the law on assisted dying.

The United Kingdom is, of course, the birthplace of the hospice movement, and we have some of the best palliative care services and specialists in the world, but as we have heard this evening, our system simply is not working. We have demand for palliative care and hospice services on a scale that was never anticipated in the post-war years in which the NHS was developed. The challenges of growing demand have been sadly exacerbated by decisions that the Government have made, as we have heard.

[Sir Edward Leigh (Gainsborough) (Con)]

On Friday, I went to St Barnabas hospice in Lincoln, our local hospice, which does wonderful work, and talked to its chief executive officer, who is tearing his hair out. Because of the national insurance increase, he is losing £300,000 a year. He pays his nurses less than the local hospital; he has to. He is literally funding the NHS and cutting his own service in the hospice. I beg the Government to think again about the national insurance increase on hospices.

[Danny Kruger]

My right hon. Friend makes absolutely the right point. It echoes the experience of hospices across the country. Prospect House, which is on the edge of Swindon and is in my constituency of East Wiltshire, receives only 23% of its funding from the taxpayer. It faced a significant deficit this year, so it took immense pains and steps to bridge its funding shortfall. There was a huge response to a public fundraising appeal, and it raised over £170,000 from the local community, but that was before the Budget. The effect of the national insurance increase alone on Prospect House is £170,000, so the public’s generosity has been entirely wiped away by the Chancellor, and Prospect House is back exactly where it was.

Julia’s House in Devizes is a children’s hospice, and the most wonderful, moving place that I have visited in my time as an MP. It has had a similar experience. It gets only 8% of its budget from the taxpayer. Its deficit has gone up from £900,000 before the Budget to £1.1 million now. We therefore desperately need a comprehensive review of palliative care.

I pay tribute to the hon. Member for York Central (Rachael Maskell), and to Baroness Finlay in the other place. They are leading a review of palliative care, with a view to coming forward soon with recommendations for the Government on how to improve the system. Indeed, thanks to Lady Finlay’s amendment to the last Government’s Health and Care Act 2022, integrated care boards are required to commission palliative care. Unfortunately, no money was attached to that amendment, and as we have heard, the way in which some ICBs commission care is not good enough. I regret, for instance, that the ICB in our area will not commission Julia’s House, the children’s hospice that I mentioned, so we need a better commissioning model.

I take issue with the point made by the hon. Member for Birmingham Erdington (Paulette Hamilton) that ICBs cannot find the money for these services in their budgets. They could if they did their job properly and commissioned services locally. They should be able to move budgets around. The fact is that if proper investment is made in palliative care, money is saved elsewhere in the NHS; that is the crucial point. Expensive bed stays in hospital would be reduced, as would demand on ambulances and other services. It should be possible to improve palliative care within the ICBs’ current envelope.

We do not want a system of enforced uniformity, or a great new national bureaucracy. I am concerned to hear some hon. Members suggest that we nationalise the system; I do not think that is right. We need to ensure that ICBs can do the job that they need to do, and that hospices can innovate as they want.

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[The Minister for Care (Stephen Kinnock)]

I pay tribute to the hon. Member for Wimbledon (Mr Kohler) for securing the debate and making such a powerful and thoughtful opening speech. I thank hon. Members from across the House—there are too many to list. It would be impossible to capture the richness of the contributions made. Something like 28 Back-Bench Members made speeches—I am sure Madam Deputy Speaker will correct me if my numbers are not quite right. It was an excellent debate, and I thank everybody for their contribution. I thank all those who work or volunteer in the hospice and palliative care sector for the deeply compassionate care and support that they provide to patients, families and loved ones when they need it most.

This Government are committed to building a society in which every person receives high-quality, compassionate care, from diagnosis through to the end of life. We will shift more care out of hospitals and into the community, to ensure that patients and their families receive personalised care in the most appropriate setting. Palliative and end of life care services, including hospices, will have a vital role to play in that shift. The reality is that we have a mountain to climb. Our health and care services are on their knees, but this Government will strain every sinew to build them, and to create a health and care system that is once again fit for the future.

In England, integrated care boards are responsible for the commissioning of palliative and end of life care services to meet the needs of their local population. To support ICBs in that duty, NHS England has published statutory guidance and service specifications. While the majority of palliative and end of life care is provided by NHS staff and services, we recognise the vital part that voluntary sector organisations, including hospices, play in providing support to people at end of life, as well as to their loved ones.

Most hospices are charitable, independent organisations that receive some statutory funding for providing NHS services. The amount of funding each charitable hospice receives varies both within and between ICB areas. The variation is dependent on demand in the area, and on the totality and type of palliative and end of life care provision from NHS and non-NHS services, including charitable hospices, within each ICB footprint.

We understand the financial pressures that hospices have been facing, which is why last month I was truly proud that this Government announced the biggest investment in hospices in England in a generation. It will ensure that hospices in England can continue to deliver the highest-quality care possible for patients and their families and loved ones.

[Danny Kruger]

I also welcome that, and congratulate the Minister on getting that money out of the Treasury, but will he acknowledge that there is a difference between capital and revenue? Hospices urgently need support for their day-to-day running costs, not just more money to support the capital. They also need capital support, but that is less crucial.

[Stephen Kinnock]

I take the hon. Gentleman’s point, but hospices face a range of pressures. The capital expenditure injection that we have provided will help them in the round. Clearly, anything that helps a hospice with its budget in the round, be it capital or revenue, will help the hospice.

We are supporting the hospice sector through a £100 million capital funding boost for adult and children’s hospices, to ensure that they have the best physical environment for care. There is also £26 million in revenue funding to support children and young people’s hospices. The £100 million in capital funding will deliver much-needed improvements—from refurbishments to overhauling IT systems and better facilities for patients and visitors—during the remainder of 2024-25 and throughout 2025-26. The investment will help hospices to improve their buildings, equipment and accommodation, so that patients continue to receive the best care possible.

Hospices for children and young people will receive a further £26 million in revenue funding for ’25-26 through what was known until recently as the children’s hospice grant. That investment demonstrates the Government’s recognition of the importance of integrating services to improve the treatment that patients receive. Furthermore, through our plans for neighbourhood health centres, we will drive the shift of care from hospitals to the community, which will bring together palliative care services, including hospices and community care services, so that people have the best access to treatment through joined-up services.