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

Debate between Lewis Atkinson and Rebecca Paul

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Rebecca Paul]

I thank the hon. Member for his intervention. I was quoting written evidence, so I just quoted it, of course, as written.

We should be ashamed if what I have set out is where we end up as a result of this Bill. How would it in any way recognise patient autonomy and give them a real choice? Clearly, it would not. We will end up with patients taking an assisted death because there is no alternative to dying well. If as much effort was put into improving palliative care as has been put into legalising assisted dying, a much greater number of people would be given the dignified, comfortable deaths they rightly deserve. It is a travesty that we find ourselves considering the introduction of assisted dying while hospices are on their knees and patients face a postcode lottery when it comes to receiving adequate end-of-life care. Accordingly, I will vote against new clause 36.

[Lewis Atkinson (Sunderland Central) (Lab)]

It is a pleasure to serve under you this this morning, Ms McVey.

I rise in support of new clause 36, which sets out an entirely workable, appropriate and safe set of provisions for the Secretary of State to ensure that these services are provided across England, as well as appropriate powers for Wales, although I am far from being an expert on those matters.

The new clause would convey powers to the Secretary of State to commission services free at the point of use, in a way that is entirely analogous to the commissioning of other health services that are provided, as we know, by a range of providers.

I came to this place having been an NHS manager for nearly 20 years, and I feel that the debate has sometimes slightly confused elements of commissioning, provision and the way in which the NHS commissions and manages services. My hon. Friend the Member for Banbury said that the state must oversee and regulate the service, and I entirely agree. Commissioning powers sitting with the Secretary of State will ensure that that is the case. The hon. Member for Richmond Park said that the issue is who is commissioning. Again, we are clear that the only person doing any commissioning will be the Secretary of State, potentially delegating this to NHS structures at the time.

The NHS and the Secretary of State are not unused to commissioning highly specialised, sensitive services in this way. Indeed, I would be amazed if the Minister and my hon. Friend the Member for Spen Valley do not confirm that the Government were involved in the drafting of this new clause to ensure that it is equivalent to the other powers that the Secretary of State has.

This will clearly be a specialist service. It is a new service. At high levels of NHS England and equivalent bodies, there is significant expertise and practice in commissioning specialised services. The importance of the commencement period, which I hope we will discuss later today, is that engagement around the exact service specification will be drawn up in just the same way that it would be for a new cancer treatment or a treatment for a rare disease. It is right that the time will be taken to engage on that.

Fundamentally, services have to be commissioned. Some suggest that this will be a free-for-all, that anyone can provide this service and that anyone can be paid for it, but that idea is nonsense. There is no obligation for the Secretary of State to reimburse anyone who decides they want to provide this service. The service must be explicitly commissioned.

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

Debate between Lewis Atkinson and Rebecca Paul

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Lewis Atkinson (Sunderland Central) (Lab)]

It is a pleasure to serve under your chairmanship, Ms McVey, fortified as I am now with a touch of breakfast.

I wish to open my comments on this set of amendments by reiterating the importance of respecting people’s beliefs in healthcare and the contribution that people of different faiths, beliefs and positions make, no matter where they come from, in the context of the activities under the Bill.

I accept and recognise that amendment 480, in the name of the hon. Member for East Wiltshire, would do an important job in strengthening the Bill’s provisions. I obviously want to hear what the Minister says, and I note the comments from my hon. Friend the Member for Spen Valley, but I would want to see this sort of expansion in the final Bill when it goes back to the House. If they may not be the exact right words today, I repeat the offer that my hon. Friend has made to work across the divide, as it were, to ensure that such provisions are included in the Bill.

With the benefit of an overnight reflection, I feel that last night we got somewhat muddled around some of the objections on conscience, particularly when we go beyond the individual. Amendment 480 and equivalent amendments deal very clearly with individuals not having an obligation to carry out acts that would offend their conscience in the provision of these services. I think we can broadly agree on that. The remainder of the debate got rather muddled between organisations providing assistance under the Bill and the locations at which the final act of an assisted death may take place. I think those are importantly different.

On organisations providing assistance, I want to reset things with a common-sense approach to how it will work in practice. The hon. Member for Reigate made the point that hospices should be under no obligation as organisations to provide specific services. I agree. The powers set out under clause 32 for the Secretary of State to make arrangements for the provision of these services, which we will come on to debate at some point, will operate as they do elsewhere across the health service. An NHS organisation or another organisation will say, “This is the set of services that we provide as an organisation.” I see nothing in this Bill that will compel them to do anything other than that. Healthcare organisations up and down the land now make decisions about what is appropriate for them to deliver, based on skills, expertise and demand and whether they think they are well placed to provide care.

I agree with the hon. Member for Reigate, but it does not follow that the amendments are required to enforce that principle. As I understand it, because it is permissible, every organisation and every individual practising healthcare professional will be able to say, “On my own bat, I’m not going to participate in this, regardless of what my employer believes,” not least because of clinical governance and regulation. There is already a strong body of healthcare regulation around the acts and services that are provided. It is currently overseen by the Care Quality Commission. We do not need to reinvent that regime.

I reassure Members that I think it entirely appropriate for hospices or other providers of palliative care to consider whether they want to participate, should the Bill become law. I imagine we will get to a situation in which some will and some will not, which is absolutely appropriate. Particularly in end-of-life cases, a patient will make a choice on the back of that. I am aware that some end-of-life care providers in my area are actively considering whether this is something that they will do; I am equally aware that there are others that think it is not for them. We heard in evidence that in Australia some providers of palliative care provide integrated, holistic care in which it is one of a number of options, whereas other providers do not.

Amendment 481 would insert a new subsection (3)(a) into clause 23, which suggests that an employer has the power to veto an employee doing an act on their time. That is moot: it is not necessary. In the healthcare environments in which I have worked, a doctor may practise elsewhere, doing their own thing, but while they are employed in a certain NHS trust to do an NHS service, they cannot suddenly decide to do something else.

[Rebecca Paul (Reigate) (Con)]

The hon. Member is giving a powerful speech. My amendment is only to ensure that if the employee is working in an NHS clinic, they comply with the policy of that clinic. It would not restrict their doing other things in their own time. The wording of the amendment is clear, as I discussed with the hon. Member for Spen Valley yesterday, that it is just while the employee is performing services for the employer.

[Lewis Atkinson]

I agree that that is what the wording says, but my point is that it is moot. The hon. Lady herself states that the amendment is to prevent an employee from going against the policies of the employer. That power already exists. No healthcare professional says, “Even though I’m employed as a doctor today by such and such a trust, I’m going to do a set of procedures or practices that I want to do.” It is moot.

I have no issue with subsection (3)(a) in amendment 481, although I think it is unnecessary. However, I think subsection (3)(b) is deeply problematic. It cuts across employment law protections by referring to selection when hiring employees. There is a reference to the Equality Act, but as others have noted, it is not clear what protected characteristics we are talking about. At a deeper level, if we accept that there is going to be mixed provision, I would argue—and I think this Committee, in a small way, has shown this—that there is some benefit to that. We should not get to a position where every medic of a certain viewpoint on assisted dying works for one organisation and every healthcare professional of a different viewpoint works for another.

That is not to say, by any stretch, that organisations would be forced to offer assisted dying. Clearly they would not. If the Bill becomes law, however, I want a society that is relatively at peace with it in healthcare, recognising people’s ability to conscientiously object as individuals. Setting up a dichotomy from the start, in which where a medic decides to work is determined by their views on such and such a procedure, is not a road that we should go down. I also have serious concerns, in terms of employment law, about subsection (3)(b).

[Rebecca Paul]

The amendment is simply to prevent a discrimination case. Let us take another example. A rape refuge may provide services to women who have suffered sexual abuse; it may be appropriate, in that instance, to hire only women to support those domestic abuse survivors. In order to prevent a discrimination claim when hiring, we have to rely on the Equality Act and the exemptions carved out. All my amendment says is that the same exemption would apply when a hospice or clinic is employing. It is just to avoid those issues down the road.

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

Debate between Lewis Atkinson and Rebecca Paul

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Rebecca Paul]

My hon. Friend makes a good point; I completely agree with him on that front. This goes back to being clear on the face of the Bill about what the panel does and the powers it has in order to avoid ambiguity. It is important that we set that out now, during this process, rather than finding ourselves in a position in two years where it is all starting to happen, if the Bill is approved, and the questions starting at that point. Let us try to answer them now and be really clear about it.

Where a panel does not hear directly from a patient, it may be forced to rely on second-hand accounts. In law, second-hand evidence is known as hearsay and is always handled with a lot of provisions and warnings across our criminal and civil legal systems, because it can be inaccurate or of lower quality than evidence directly from a source. However, the panel is open to depending on such evidence. We must be clear-eyed about the risks that come with that.

In summary, I do not believe that new clause 21 gives sufficient clarity on how the panel will perform its role and what evidential standard it would apply. We do not know if it is an administrative task or a judicial one. We do now know that the panel is inquisitorial—I thank the Bill’s promoter for that—but we do not know how much it will rely on hearsay evidence in practice. I will say this again, because it is really important: the panel is required to hear from only one doctor and does not need to question them. Under the Bill, would it be legally acceptable for the doctor to turn up, say, “No concerns”—and that’s the end of that? I am here to tell Committee members who think that that will not happen if the Bill allows it: somewhere, with some panel, it absolutely will—particularly as our society gets desensitised and more comfortable with the concept of assisted dying.

I urge the Committee to be precise with the legislation it is passing for the sake of the statute book and, more importantly, for the sake of all the people who may find themselves being assessed by such a panel.

[Lewis Atkinson (Sunderland Central) (Lab)]

The hon. Lady sketches out a very short exchange. Does she think that we should specify in primary legislation the exact nature of interactions in these sorts of matters elsewhere—in the High Court, employment tribunals and so on? In my understanding, we do not: we trust regulated professionals to have appropriate interactions. It is not for Parliament to say that a lawyer or doctor should ask x or y question. Does she agree?

[Rebecca Paul]

I am afraid I do not agree. I do not think that we should not put in place precise legislation because we trust that everyone will do the right thing. Our job as lawmakers is to always think about the worst possible situation that could arise and legislate accordingly to protect against that as best as possible. In 99 cases out of 100, it will work perfectly fine and people will do their job as they are meant to. The point I am trying to draw out is about exactly what the Bill says, and what it says is required is actually very little. The panel is required to “hear” from only one of the doctors. I still do not know what “hear” means. Exactly what content are they meant to provide? That is the point I am making. It is important that we make legislation for the worst-case scenario. That is our job.

[Lewis Atkinson]

I am not going to pursue that exact line of argument. The point of discussion, and the point of the vote, is whether we think this proposal, which, to me, is robust—the panel “must hear” from doctors and “must…hear” from the patient unless there are exceptional circumstances, and three professionals are involved—is stronger than the previous draft that involved the High Court and had no such requirements. Even if the hon. Lady does not think the new clause is perfect, does she think it is a stronger set of safeguards—surely it is—and will she support it?

[Rebecca Paul]

Again, I am not sure I agree that that is what I am here to do today. I think my job is to set out the strengths and weaknesses of the proposed amendment, and I do think that the High Court judge safeguard, on the face of it, was probably safer. I appreciate, value and truly welcome what the new clause attempts to do by bringing in psychiatrists and social workers, but it has come in at the wrong phase of the process. I am not sure we are really getting the value of that expertise at the judicial point; we would have got that value at the clinical stage.

I ask Members to take what I am saying in the good faith that it is meant. My intention is to make sure that the Bill is as safe as possible. I do not profess to have all the answers, but I do have questions, and sometimes it is useful to ask questions, because there are others here who can answer them. I hope that, by asking questions when we are uncertain whether something is the right way forward, we will get a stronger piece of legislation.

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

Debate between Lewis Atkinson and Rebecca Paul

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Rebecca Paul]

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

[Lewis Atkinson (Sunderland Central) (Lab)]

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

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

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

Debate between Lewis Atkinson and Rebecca Paul

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Rebecca Paul]

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

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

[Lewis Atkinson]

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

[Rebecca Paul]

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

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

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

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

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

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

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

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

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

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

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

They added,

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

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

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

Debate between Lewis Atkinson and Rebecca Paul

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

I thank the hon. Lady for that intervention. I know that she is wholeheartedly seeking to make sure that the safeguards in the Bill are as good as they can be, so I very much appreciate her recognising the positive intent behind my amendments.

It would be useful to understand whether those who are legally qualified believe that undue influence is already covered by “coercion”. I am not qualified to give a view on that, but if that were the case, that would provide some reassurance, and that could then maybe be included in guidance. However, I would want to see a legal opinion on that.

In the absence of such a legal opinion, putting that on the face of the Bill is the safest—and the right—thing to do at this point in time. I suspect that we will be voting on this shortly, before we can get a legal opinion, and given that we are talking about safety here, I would rather go for belt and braces and include “undue influence” on the face of the Bill.

[Lewis Atkinson (Sunderland Central) (Lab)]

Can I just clarify something? As my hon. Friend the Member for Penistone and Stocksbridge said, I understand that “undue influence” has an existing meaning, but only in equity law. The hon. Lady herself mentioned wills, for example, being challenged in probate. There, as I understand it, the burden of proof rests fully on the person challenging the will; there is not an active test that someone has not been unduly influenced. If the hon. Lady is to use undue influence as an existing legal concept, would she favour reversing the presumption on the burden of evidence? In addition, I think there is a distinction between actual undue influence and presumed undue influence in the case law. I wonder which of those she thinks we should be using when considering this amendment.

[Rebecca Paul]

I thank the hon. Member for that intervention. I think the point on probate is right; it is commonly used there, but it is not just used in that situation. My understanding is that, when it comes to decisions by clinicians with regard to withdrawing life-sustaining treatment, undue influence is one of the considerations.