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

Debate between Naz Shah and Rachel Hopkins

Committee stage
Tuesday 25th March 2025 Public Bill Committees

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

On my hon. Friend’s point about marking one’s own homework, does she agree that many public bodies do a self-assessment that is then looked at by the regulator? It is as important a part of the process of self-regulations as external inspection.

[Naz Shah]

As far as I have seen, no regulatory system has been proposed in regard to the Bill. I am happy to be corrected. Yes, in other instances we have regulators, but in this instance no regulator is specified. That is why I will come back to my argument about the amendment, but I value my hon. Friend’s intervention.

This is not how we regulate banks, which are overseen by independent authorities. We have seen what happens when there is light-touch regulation. Banks told us all that they were doing a great job until it turned out that they were not. There is an Independent Police Complaints Commission—I could go on, as the list is very long, but I hope we can all agree on the principle. When we regulate an important system in this country, we should not allow the people who run it to be the only people to tell us whether it is working as it should. Although we respect the highly skilled people who run our schools and police our streets, we have independent people whose job it is to check whether there are any major issues.

The assisted dying system created by the Bill is both complicated and, potentially, very dangerous. If the system gets things wrong, it will mean that people will be given lethal drugs who should not have had them. That is why I would strongly support keeping the chief medical officers as the people who run monitoring, investigating and reporting. Perhaps there could be a dual system in which both the CMOs and the VAD commissioner have some kind of role. That would at least be an improvement on allowing the assisted dying commissioner to say, “There’s nothing to see here.” In my view, the best choice would be to retain the system that the Bill started out with and keep the chief medical officers as the people with the main responsibility for oversight.

Members disagreed with my comparison of assisted dying with the scandal of what happened to the sub-postmasters and mistresses, but we have to think about what we have learned about the causes of that scandal. Under the law, Ministers had responsibility for the Post Office. Even though it was an arm’s length responsibility, they still had it. When complaints about the Horizon IT system, and then complaints about miscarriages of justice, started to come through to MPs, Ministers asked the experts in the field. Who were those experts? The executives who ran the Post Office and the engineers at Fujitsu who had set up and then run the Horizon system. What did those experts say for about 15 years? That there were no serious problems with Horizon, that the sub-postmasters and mistresses who said otherwise were lying and that all their convictions were safe. We know how that turned out.

That surely leads us to a clear lesson: we cannot ask powerful people who have created and are in charge of a system—in this case, the assisted dying system—to be the ones who report on it. I am not saying that we would see a deliberate cover-up, as there seems to have been in the Post Office scandal. What I am saying is that we all have unconscious biases and all of us are biased to think that the work we do is good and that there are no serious problems with it.

Amendment 382 significantly weakens the version of the Bill that was presented to the House on Second Reading. We are being asked to let the commissioner report on their own work. That makes it much less likely that we would be able to spot any problems with the assisted dying system at an early stage. I therefore urge Members to vote against the amendment.

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

Debate between Naz Shah and Rachel Hopkins

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Naz Shah]

It is an honour to follow the hon. Member for Reigate, who takes the record for being on her feet the longest in this Committee.

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

Oh no—that’s yours!

[Naz Shah]

She beats my record for sure. I assure the Committee that my comments on new clause 17(a) will be brief in comparison with my previous speech.

Yesterday, my hon. Friend the Member for Ipswich and I disagreed on a point of detail. In fact, he was right and I was wrong. As he said, a provision in paragraph 4 of new schedule 1 allows the Secretary of State to dismiss a bad commissioner if the circumstances merit it. Although I still maintain my position that too much power is being given to a single person, I thank my hon. Friend both for pointing that out and for the courteous way in which he did so.

The hon. Member for Reigate has spoken very eloquently in defence of her amendment. Just to recap, new clause 17, tabled by my hon. Friend the Member for Spen Valley, would allow a person seeking an assisted death to appeal to the commissioner if a panel refuses their request. However, it would not allow any other person to lodge such an appeal.

By contrast, new clause 17(a) would allow several other parties to lodge such an appeal, including the two doctors who took part in the process, the applicant’s next of kin or relatives, or anyone who took part in the proceedings before the panel or who gave evidence to the panel. I acknowledge that there are genuine arguments against accepting new clause 17(a), and I have listened to them in detail and given them sincere thought. The family members who might appeal against a decision could perhaps have little or no contact with the person on whose behalf they say they are appealing; I note that the hon. Member for Harrogate and Knaresborough made a very honest and personal intervention on that subject yesterday, and I accept that that is a real possibility. As we all know, families are complicated.

There is also a likelihood that allowing more people to appeal against a panel’s decision, both for and against an assisted death, could mean that the commissioner will need considerably more resources. Otherwise. it is very likely that appeals will not be heard within a reasonable period.

Those are genuine arguments, but there are equally strong counterarguments. If the Bill passes, we simply do not know how many coercive or abusive people will seek to drive others towards assisted death. My hon. Friend the Member for Spen Valley spoke about coercion being a criminal offence, but the last figures I have seen show that only 4% of cases result in a conviction. However, it is worth noting that many people with experience in this area are very concerned about the possibility.

We also do not know how many people will opt for an assisted death because their palliative or social care needs are not being met. Again, as I referred to extensively in previous speeches, many people with first-hand experience of this field are extremely concerned about that.

We also do not know how many people will opt for an assisted death partly because they do not want to be a burden on their loved ones. We do not know how many of those loved ones would, in fact, be ready to care for the person who feels like a burden, nor do we know what safeguards, if any, will prove effective against any of those dangers.

One thing we do know is that relatives or carers of someone seeking an assisted death may be able to bring those dangers to light. A family member, a GP or even a paid carer may have seen someone come under coercive control. As new clause 17 stands, they might feel that the panel had made a terrible mistake in ignoring the evidence of that. The hon. Member for Reigate’s amendment (a) to the new clause would give those people the chance to bring their evidence before the commissioner.

I have to say that, as it stands, new clause 17 seems to make some fairly odd assumptions. It would allow an appeal if the applicant’s request for an assisted death were turned down, which means that my hon. Friend the Member for Spen Valley acknowledges that the panels may on occasion get things wrong. But the right of appeal is only one way, which seems extremely odd. It surely cannot be the case that the panels might get things wrong when they turn down a request for assisted dying, but are always right when they accept them.

There surely needs to be an amendment that allows people with knowledge of the situation to appeal if they think the panel has made a mistake in allowing an assisted death. Amendment (a) to new clause 17 would also reduce some of the dangers that we first faced. On that basis, I urge the Committee to support the amendment.

Terminally Ill Adults (End of Life) Bill (Twenty First sitting)

Debate between Naz Shah and Rachel Hopkins

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Naz Shah]

The truth is—I said this in my previous speech, which I will not repeat, as instructed by you, Mrs Harris—that neither of the safeguards is strong enough. As it was, the Bill was not strong enough—that has been recognised and changes have been proposed—but neither is the idea of a commissioner.

There is another great problem raised by this set of changes to the Bill: they seem likely to increase the prospect of group-think when it comes to members of the panel. I would argue that that danger has been greatly increased by the move away from the High Court judge model that was originally in the Bill.

When my hon. Friend the Member for Spen Valley introduced the Bill on Second Reading, she reassured the House that all assisted dying applications would have to be examined by a High Court judge. There were problems with that proposal, which is why she abandoned it. But there was one strength in making a High Court judge the arbiter: the Crown does not appoint High Court judges on the basis of whether they agree with assisted dying. We could all reasonably expect High Court judges to have a range of views on assisted dying; there is no reason I can think of that would mean that High Court judges, as a body, were biased in favour of assisted dying.

Something different will happen if a commissioner selects people to serve on these panels. Anyone serving on a panel will know that they will have to approve some applications for assisted death. We do not know how many applications for assisted death the Government expect to have. We also do not know how many social workers, psychiatrists and lawyers would be unwilling to approve any assisted death applications at all—I do not want to repeat myself, but I will be referring back to psychiatrists in another amendment. However, the number of psychiatrists who are strongly opposed to assisted death is very high, according the Royal College of Psychiatrists. We have also heard strong reservations expressed by the Association of Palliative Care Social Workers. Therefore, many professionals will choose not to sit on these panels, because they will not want to approve any cases. That means that some panel members are likely to end up dealing with dozens of cases per year. That poses the danger that some of the people who sit most on these panels will be advocates of assisted dying and will approve applications that other members may not have.

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

I thank my hon. Friend for discussing her view of the approach of the proposed panel members. Does she recognise that all three of those professions have professional requirements to act with integrity and in accordance with the law? It is highly unlikely that they will push forward, as she seems to suggest, and risk their professional accreditation.

[Naz Shah]

I am not questioning people’s integrity; I am putting it to the Committee that people have biases. We all have subconscious biases. We have things that we like; we know that that exists, whether it is a subconscious bias or a conscious bias. As human beings, we all have that. In this instance, I am suggesting that if we have members of a panel who choose to be there because they have a fundamental belief, which is different from that of those who oppose assisted dying, there is a risk of subconscious bias and group-think.

[Rachel Hopkins]

rose—

[Jake Richards]

rose—

[The Chair]

Order. I call Rachel Hopkins for an intervention, but we need to keep to the point and not labour one particular thing.

[Rachel Hopkins]

The point I was making was that no professional would want to risk their professional accreditation and career by allowing a complete bias to take over any decision making. In fact, I would suggest that some may want to prove their integrity by being involved in these decisions and making them in line with their professional practice.

[Naz Shah]

I disagree with my hon. Friend. Subconscious bias operates in society; this is not about being held to account. People are not doing these things deliberately, but because they have a subconscious bias.

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

Debate between Naz Shah and Rachel Hopkins

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Naz Shah]

I thank my hon. Friend for his intervention. There is a medical model and a social model of intervention. If I walk into a GP surgery with a really bad headache, I am prescribed paracetamol. If the headache gets worse, I am prescribed something stronger—maybe co-codamol or codeine. Doctors are really busy. We have had to add another 40,000 appointments just for people to get through systems, so we know how hard it is to get a GP appointment.

If the person who turns up at the GP’s with a headache is usually quite healthy, the doctor might not take a minute to ask about what has actually happened. If I say, “I have a headache because I am banging my head against the wall—I have that much stress”, that is a whole different conversation. Having that conversation with the patient—probing a little more—is, for me, very important from a holistic point of view.

[Rachel Hopkins]

I want to check that my hon. Friend was not implying that I had not thought deeply—for more than a minute–in the course of making my comments earlier.

[Naz Shah]

No, that was not my implication. When referring to my hon. Friend’s remarks, I was speaking about a patient perhaps saying “It is none of your business” or that my hon. Friend was talking just about autonomy.

[Rachel Hopkins]

I am grateful to my hon. Friend for reiterating those points. Does she accept that it is a patient’s right to say, “It’s none of your business” in the course of the conversation?

[Naz Shah]

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

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

[Naz Shah]

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

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

[Rachel Hopkins]

Will my hon. Friend give way?

[Naz Shah]

Sorry, I will just finish my point.

From a common sense perspective—I am not medically qualified—that situation should make me, as a human being, want to understand more. As a human being, I would like to understand whether something else was going on, such as anger towards—

[Naz Shah]

Sorry, I will not give way until I have finished my point.

I would like those conversations to be at least explored, which is why I support the amendment.

[Rachel Hopkins]

The Bill already sets out a number of things that a doctor has to assure themselves of, with regard to coercion and capacity. They would do that having had a significant amount of training to establish, in the round, after consulting others, that one way or another the legal requirements have been met. The “Why?” question appears to me to bring in a judgmental element—

[Rachel Hopkins]

Indeed: subjective, as the right hon. Gentleman said. That is the point that I am trying to get at. There is an objective assessment, which is wholly appropriate, but a subjective assessment would lead down a different route and muddy the objective assessment.

[Naz Shah]

I absolutely see where my hon. Friend is coming from and appreciate her concern, but we will have to agree to disagree as we have a difference of opinion. A subjective assessment might reveal that something else is going on for that patient.

I hate to put myself in this position, but imagine I have just received a diagnosis and I am going to die within six months. I could have a whole load of anger about that happening to me and I could say, “I don’t want this. I don’t want to talk about it. It’s none of your business. I’m angry—this is what I want.” At that point, does the doctor stop? In most cases, my hon. Friend the Member for Luton South and South Bedfordshire is absolutely right, but in some cases she might not be. I might want to shut the conversation down because I am angry or because other things are going on in my head and I do not want to explain. Amendment 468 would allow the doctor, from a compassionate point of view, to have another conversation with the patient.

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

Debate between Naz Shah and Rachel Hopkins

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Naz Shah]

Amendment 290 was tabled by my hon. Friend the Member for York Central (Rachael Maskell). Clarity is needed on who a medical practitioner is. With the regulation of physician associates, there was much unease from the British Medical Association and others on the role and function of the new profession. Although I do not want to debate the merit of this today, it is clear that involvement in the assisted dying process requires someone of significant experience to support a patient while undertaking complex assessments and co-ordinating their care between specialists and others.

In some jurisdictions, we have heard that clinicians have extensive clinical experience, whereas they do not in others. Therefore, being able to determine the level of experience and competencies of the medical practitioner is important to ensure that the patient is receiving care from someone who has significant practice expertise. A doctor in training, whether as a specialist or general practitioner, although making very specific clinical decisions, should not be deemed as having the experience, competencies or breath of experience for the purposes of this process. An associate practitioner should also not be deemed to reach these thresholds. Amendment 290 would therefore show the public that the person who would act as the co-ordinating doctor held such experience, and that there was no doubt in their standing to register for such a role. The public can already be confused on the exact status of the clinician they are under or indeed the profession itself. Including this safeguard would ensure that the patient’s interests are upheld.

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

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

I rise to speak in support of amendment 185, in the name of the hon. Member for Spen Valley, the Bill’s promoter, regarding training requirements that need to be made by regulation. It would place a duty on the Secretary of State to make regulations about training qualifications and experience required in order to act as a co-ordinating doctor. Similarly, amendment 186 says that the regulations should specifically include training relating to the assessment of capacity and assessing whether a person is being coerced or pressured by any other person. Proposed new subsection (3C), introduced by amendment 186, would make provision that

“the required training, qualifications or experience is to be determined by a person specified in the regulations.”

In making those regulations, reflection of expertise is vital. We heard from many experts who gave us evidence about the importance of training, development and mentorship, which we would expect to see covered in the regulations. Placing those requirements in regulations would mean that they could be developed through consultation with experts and stakeholders, after gaining a wide range of feedback. It would also future-proof the requirement of any training to be developed and strengthened through future experience.

As part of the safeguards in the Bill, the key principles around assessing capacity and potential coercion are really important. I am therefore minded to press the hon. Member for Spen Valley also to support amendment 20, in the name of my hon. Friend the Member for Lowestoft (Jess Asato), which states:

“Regulations under subsection (3)(a) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”

That would provide further clarity, and would further strengthen training on assessing coercion in all senses of the word as part of the safeguards, which many Members, even in the earlier debates, have said that it is so important that they see. I agree, and I hope that the promoter of the Bill will support amendment 20.

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

Debate between Naz Shah and Rachel Hopkins

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Naz Shah]

The hon. Member makes an important point. That is precisely why we need to have a conversation to ascertain that autonomy, which is what this comes back to—the whole purpose of this Bill is to give people autonomy. It is important that when benefit is being derived, it is not because they are a burden. We need to ascertain that that has been explored and was not about that, but that it is an informed choice and an autonomous decision. That comes back to the conversation around coercion, manipulation or whatever word we want to use; we voted down provisions on the term “undue influence”, but those are the words that apply.

In my understanding, this amendment is about having a conversation to probe what measures will be in place to ascertain what that person is actually saying. I would not wish that experience on the hon. Member, but he could be in that situation, and make that informed choice and be able to demonstrate that—again, we discussed the amendment from my hon. Friend the Member for Broxtowe on the word “demonstrably”. I am very keen to have those conversations, and that is the purpose of this amendment.

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

The point about conversations is really important. I wonder how many conversations my hon. Friend has had with terminally ill people, their family members and children, because I have had quite a few, like the example given by the hon. Member for Solihull West and Shirley, over a number of years now. It is so important to recognise that it is about the individual’s autonomy, but we cannot take away the fact that their loved ones may also derive a benefit in a way that the hon. Gentleman elucidated. Can my hon. Friend see how so many of us here want clarity, but do not want to put at risk an individual’s autonomy with a very subjective decision?

[Naz Shah]

I am sure my hon. Friend did not mean to suggest it in that way, but I feel slightly taken aback by the questioning of whether I understand the importance of this. I remind hon. Members that nobody in this room has had a forced marriage apart from me. That does not mean to say that they do not have empathy when I share my experience. To suggest—

[Rachel Hopkins]

Will my hon. Friend give way?

[Naz Shah]

Let me finish. Perhaps my hon. Friend did not mean to question whether I understand and appreciate it, but it suggests to me, does anybody? Yes, we heard witnesses. We heard evidence. I have heard about it in my own friendship circles. I had a young intern with me not so long ago who had cancer. We talked about this, when I decided to come on to this Bill Committee. A dear friend of mine lost her husband and asked me to support this Bill because of his experiences. I speak to doctors regularly. I have had one parent who died of cancer; the other survived cancer. I have had recent deaths; my own father was in a hospice, and others were in a hospice. To be really clear, I do not think the importance of autonomy is lost on any Member on this Committee or in the House. It is because of that importance that I agreed to take part in this Committee.

[Rachel Hopkins]

I hope that my hon. Friend will accept that I was not questioning her ability to understand the importance of the matter. I wanted only to place on record the importance of having those conversations and to ask whether she recognised that. I am really pleased that she has had so many conversations. That is why so many of us are here and want to see the change in the law, but we do not want to tie it so tightly that it would reduce the autonomy of an individual.

[Naz Shah]

I am grateful that we have been able to have this conversation as we have done. I share my hon. Friend’s concern. Equally, I am also concerned that we may now not have a judge’s oversight on this. There is potentially an amendment seeking to replace that with a panel of experts, which we will not get to debate until we have seen it.

Returning to amendment 94, tabled by the right hon. Member for Braintree, I have already talked about Professor Allan House’s contribution. The importance of the issue is not lost on the House. This includes people who do not want to take up their children’s time. As the hon. Member for Solihull West and Shirley suggested, there is that conversation to be had with families, no doubt. We speak from the privileged position of being able to have those conversations. In an ideal world, we would all be equal, but we are not.

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

Debate between Naz Shah and Rachel Hopkins

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Naz Shah]

Q Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”

What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?

Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

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

Q Claire, you mentioned multidisciplinary teams and decision making. We have heard in a couple of other evidence sessions from palliative care social workers, nurse practitioners and the Royal College of Nursing about the multidisciplinary approach in care. What are your thoughts on the ultimate approval as set out in the Bill being a doctor, another doctor and then a legal okay at the end? Would a more multidisciplinary approach to approval have stronger outcomes or better safeguards?

Claire Williams: I absolutely agree that a panel/committee approach would have better safeguarding for patients, because the decision is being made collectively with legal expertise and with other healthcare professionals—that might be palliative—or ethicists like myself. It is having that collective view, ensuring that everybody is happy and that that is exactly what the patient wants. I believe it should be a committee/panel-based approach for the final decision. As I said before, expecting a High Court judge—just one individual—to make that decision alone is hugely burdensome and not an approach that we should be taking.

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

Debate between Naz Shah and Rachel Hopkins

Thursday 30th January 2025 Public Bill Committees

[Naz Shah]

Q Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”

What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?

Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

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

Q Claire, you mentioned multidisciplinary teams and decision making. We have heard in a couple of other evidence sessions from palliative care social workers, nurse practitioners and the Royal College of Nursing about the multidisciplinary approach in care. What are your thoughts on the ultimate approval as set out in the Bill being a doctor, another doctor and then a legal okay at the end? Would a more multidisciplinary approach to approval have stronger outcomes or better safeguards?

Claire Williams: I absolutely agree that a panel/committee approach would have better safeguarding for patients, because the decision is being made collectively with legal expertise and with other healthcare professionals—that might be palliative—or ethicists like myself. It is having that collective view, ensuring that everybody is happy and that that is exactly what the patient wants. I believe it should be a committee/panel-based approach for the final decision. As I said before, expecting a High Court judge—just one individual—to make that decision alone is hugely burdensome and not an approach that we should be taking.