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

Simon Opher Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Daniel Francis]

It is a pleasure to serve under your chairmanship, Mr Dowd. I accept that we had a long debate on issues relating to mental capacity in respect of the amendments tabled by the hon. Member for Richmond Park, but we heard in oral evidence significant representations and concerns regarding how the Mental Capacity Act 2005 would work in connection with assisted dying. The purpose of the amendment is to reverse the burden of proof in relation to capacity.

In general—rightly, as I have said previously—a person is assumed to have capacity unless it is shown that they do not. As we have heard, that is a deliberately low bar in order to preserve the basic human right to participate in society and to ensure that normal daily life does not require us all to prove that we have capacity every time we make a decision. The downside of that assumption, however, is that in situations of limited or unreliable evidence, or a very borderline case, the person has to be assumed to have capacity. It is surely clear that that could put many people into real danger if such an approach were taken with assisted dying.

We should not be afraid to say that a person who is terminally ill is potentially vulnerable. Depression and stress are common and understandable responses to a terminal diagnosis and, whether we like it or not, some people in our society will prey on the fragile for their own gain. Our job is to confront the risk of someone being given access to an assisted death not because that is their considered wish, but because no conclusive evidence is available to the doctors at the time of the assessment, or because someone is controlling or coercing that person and able to persuade them in favour of an assisted death that they do not truly want by hiding any signs of their impaired capacity until it is too late.

On previous amendments, I have spoken from my personal perspective. As parents of a child with a learning disability, our greatest concern is what will happen to our child after we have gone. That is the principal thing—the sole thing, I think—that keeps my wife and me up in the night: what will be that determination for our daughter one day? I hope that her twin will remain with her, and that her twin will be the person who makes those decisions for her, but that may of course not be the case. I know that we may have to entrust the state or others to make those determinations for her in due course.

Every parent of a child with a learning disability considers that determination every day. I know that it weighs on their minds not only in connection with this clause; the decisions about their child will also weigh on their minds when we get to clause 4. I am not talking about my daughter’s case, because she does not have enough capacity, but for those people who do have enough capacity—we know from the evidence that the majority of people with a learning disability do have enough capacity—the decisions that may be made for them in due course will weigh on their minds.

In those circumstances, I suggest it is appropriate and reasonable that the assisted dying process maintains the other principles of the Mental Capacity Act, but reverses the presumption in favour of capacity in order to keep people safe. We have heard that doctors are familiar with the Act, including in cases where people sometimes do and sometimes do not have capacity. On that basis, it is not a great leap for them to look for evidence that a person does have capacity, rather than the opposite. That is a normal exercise of their judgment. It is a compassionate and common-sense approach.

I remind Members of what I have said previously about the position of the Law Society: the issue of what capacity should mean, and how to assess it, is central to the Bill. The Law Society considers that the Bill should be clearer in its approach to capacity for the purposes of ending a terminally ill person’s life. Although expert opinion may reasonably differ on whether to use the Mental Capacity Act approach or to introduce a stand-alone definition, the utmost clarity is required if the Bill’s safeguards are to be robust and effective. The Law Society’s recommendation is that before the clause becomes law, a comprehensive consultation should be undertaken to allow relevant experts to share views on the appropriate definition of capacity for the purpose of the Bill.

I will not quote everything again—I have quoted it all previously—but we have heard oral evidence on this matter, including concerns about how the Mental Capacity Act may be interpreted, from Professor House, through Baroness Falkner, Fazilet Hadi, Dr Hussain, Chelsea Roff, Professor Owen and Dr Price, to Dan Scorer of Mencap. My amendment is a compassionate and common-sense approach that would provide reassurance to members of the public. I invite the Committee to support it.

Amendment 398, tabled by the hon. Member for Reigate, goes further than my amendment, and beyond its scope, but I have some sympathy with it. I will repeat some of what I have said previously, in that I remind the Committee of the statutory principles of the Mental Capacity Act:

“A person must be assumed to have capacity unless it is established that he lacks capacity…A person is not to be treated as unable to make a decision unless all practicable steps”—

that remains a grave concern of mine—

“to help him to do so have been taken without success”,

and a person

“is not to be treated as unable to make a decision merely because he makes an unwise decision.”

I remain happy to stand corrected, as I have continued to ask for clarification on this matter, but my point that doctors or other professionals would have to take all practical steps to help them to make a decision related to assisted death has not been challenged. The matter was clearly considered to some degree previously, given that clause 62 of the Mental Capacity Act 2005 states:

“For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961…(assisting suicide).”

I also challenge whether the Bill’s authors have considered all the scenarios outlined in chapter 3 of the Mental Capacity Act code of practice, entitled “How should people be helped to make their own decisions?”, and particularly those relating to the involvement of family members and carers. Similarly, in chapter 4, “How does the Act define a person’s capacity to make a decision and how should capacity be assessed?”, the code states at paragraph 4.50:

“For certain kinds of complex decisions (for example, making a will), there are specific legal tests…in addition to the two-stage test for capacity.”

Those tests are laid out, but they do not include this scenario.

As I did yesterday, I refer to the Equality and Human Rights Commission paper provided to Members in advance of Second Reading:

“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity in the context of a decision of this nature and gravity. 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. Sensitive consideration must be given, in particular, to the interaction between mental capacity, mental health issues, learning disabilities and conditions such as autism. Clause 30 of the bill states that the Secretary of State ‘may’ issue codes of practice…However, it does not oblige them to do so.”

For those reasons, I remain concerned about continuing to use the full definition under the Mental Capacity Act 2005. I therefore commend the amendment to the Committee.

[Dr Simon Opher (Stroud) (Lab)]

I thank my hon. Friend the Member for Bexleyheath and Crayford for his sensitive and well presented amendment. I have a couple of things to say about it.

My hon. Friend says that the Mental Capacity Act is a low bar, but in the Act it is important that when we assess people for mental capacity we look at the gravity and complexity of the situation, and therefore take more consideration of deeper understanding of the issues if the gravity of the decision is very enhanced. There is scope within the Mental Capacity Act to take in these types of assisted dying assessments.

[Daniel Francis]

I hear that. There are different decisions, whether it is buying a coffee or seeking an assisted death. Would my hon. Friend concur that, for some individuals in those scenarios who may be by themselves because of the circumstances of their lives and about whose capacity there may be doubt, the doctor must presume in the first instance that they have capacity, and that the doctor must assist them in making a decision?

[Dr Opher]

Yes, I totally accept that. The Mental Capacity Act is set so that we assume capacity and look for evidence of lack of capacity. The great danger with the amendment is that it would change a whole raft of very well used provisions. As Professor Whitty said, the Act is used up and down the country every day; I have used it myself many times, and taught it as well. If we change the emphasis from the presumption of capacity to the presumption of incapacity, which is what my hon. Friend is suggesting, that is a major change in the Act.

[Naz Shah (Bradford West) (Lab)]

Given what my hon. Friend has just said—that he accepts the premise of my hon. Friend the Member for Bexleyheath and Crayford that the doctor would have to assist—can he help me to understand where that leaves the issue of autonomy if a doctor is, as he has agreed, allowed to assist in the decision?

[Dr Opher]

The way the doctor assists, if making a mental capacity assessment, is to try to tease out the four concepts. Does the patient understand what they are being asked to agree to? Sometimes mental capacity assessments are very straightforward and last five minutes; sometimes they last an hour. I have done one that lasted about 90 minutes because it was really important to tease out whether the patient genuinely understood what they were doing. That is the sort of assistance I am talking about. It is not about trying to persuade them to make a decision that I think is the right decision; it is just making sure that they understand it, can remember it and so on.

[Naz Shah]

How does my hon. Friend respond to not one, not two, but multiple witnesses, including the Royal College of Psychiatrists, saying, absolutely contrary to what he is saying, that the Mental Capacity Act is not the right bar and that the bar is too low?

[Dr Opher]

Well, that was disputed by other psychiatrists. We are asking questions about whether the Mental Capacity Act is safe and correct for the Bill. This whole Committee is about making the Bill safe. None of us would dispute that. However, I think that if we accept the amendment, the Bill will become less safe because the amendment would change a massive piece of legislation and therefore have a number of repercussions that we do not understand.

[Danny Kruger (East Wiltshire) (Con)]

Chris Whitty made the same point that the hon. Gentleman has just made: that there would be knock-on effects and that the Mental Capacity Act works very well currently. Does the hon. Gentleman acknowledge that Chris Whitty himself misrepresented the Mental Capacity Act in the evidence he gave to the Committee? He had to write to us subsequently to clarify his comment, and his clarification contradicted the hon. Gentleman’s implication that the Mental Capacity Act has different thresholds for different levels of decision. Does the hon. Gentleman acknowledge that it does not? The Act has one threshold: capacity as it defines it. Some doctors may have longer conversations than others depending on the severity of the case, but the threshold is the same—Chris Whitty misrepresented it.

[Dr Opher]

I agree that the threshold is the same: does the patient have capacity or not? That is the single threshold. We often do mental capacity assessments for inheritance, control of bank accounts and that sort of thing; sometimes we do a very quick mental capacity assessment about the refusal of treatment. How long we take depends on how important the decision is. I suggest that a doctor assessing someone’s capacity to make a decision to end their life would have a serious, long discussion—up to 90 minutes, or possibly even two hours—to make sure that the doctor is convinced that the patient has capacity. The threshold is the same—it is about whether they have capacity—but that does not mean that the conversation is the same. In clinical terms, it is very clear that a conversation on those grounds would be much more involved than, for example, whether a person sees a dentist or not, or other conversations like that.

I totally understand the concerns that the amendment has been tabled to cover; however, my main point is that if we accept the amendment, it will make the Bill less safe. The reason for that is that, as I have said before, if we change something that is well used, and repeatedly used, it will make the interpretation much more complicated. We will have to re-train all the doctors and, I think, it will not protect patients.

[Sarah Olney (Richmond Park) (LD)]

At risk of repeating something said in a previous sitting, does the hon. Gentleman accept that the amendment is not trying to amend the Mental Capacity Act itself, and it is not trying to change how the Mental Capacity Act is used in the majority of situations in which it is already used? All it is trying to say is that in this particular circumstance the Act needs to be applied in a different way. We are not trying to rewrite the Act in itself or any aspect of the way in which it is currently used.

[Dr Opher]

I understand what the amendment is trying to do; my argument is that it will not achieve that because it will muddy the waters of a mental capacity assessment, which will make how we do it less safe. I would also like to return to Professor Whitty’s comments and to say that in the majority of cases mental capacity is very clear. It does not actually take very long to assess whether someone has mental capacity.

[Naz Shah]

Will the hon. Gentleman give way?

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[Dr Opher]

It is really important to understand that for the majority of people mental capacity can be assessed reasonably quickly because it is very clear whether they have it or do not have it. What we are talking about, I think, is a small proportion of patients in which it is unclear whether they have mental capacity. There is scope in the Bill for those circumstances, when the patient should be referred to an enhanced level of mental capacity assessment by a psychiatrist or a psychological nurse. In that way, it makes it much safer. We do not need to redesign the Act for that small number of patients because we already have a very safe route to assess capacity.

[Naz Shah]

I thank the hon. Gentleman for giving way; he has been generous with his time. I do not know whether the hon. Gentleman has seen the evidence from Alex Ruck Keene KC on mental capacity. He sets out very clearly the myths around mental capacity, one of which is that mental capacity is well understood. He argues that it is not. How would the hon. Gentleman respond to that?

[Dr Opher]

I think that in most cases mental capacity is very well understood, and it is very clear, as I have said. I would say that, as practising clinicians, almost every GP has to do it. I would not sign up a doctor in training if they could not do it. I think it is a little bit rich to suggest that we cannot assess capacity. I agree with many of the comments that have been made about assessing capacity in more difficult cases for most doctors, and I think we do need an avenue, in those situations, to get further opinions.

[Naz Shah]

The hon. Gentleman said it would be rich for people to say that capacity cannot be assessed. That is not the case. I am not convinced about that, and I am not sure, from the evidence I have seen, that anybody is saying that anybody is not capable of assessing capacity per se. Would the hon. Gentleman agree that the argument is about assessing capacity for this Bill in particular? That has not been tested. The Royal College of Psychiatrists is very clear, as are many other experts, including legal experts, that the Bill has not been tested for that purpose. Therefore, the Mental Capacity Act does not meet the purpose for the Bill.

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[Dr Opher]

I feel that the Committee has been through these points quite extensively. There is clearly a disagreement in our beliefs; I accept that, but it is very important to make the Bill as simple as possible, because that is the best safeguard. I believe that the Mental Capacity Act is the right test for whether people have capacity. I reiterate that if there is a doubt in the clinician’s mind, there should be an avenue to get an expert opinion on capacity.

[Kim Leadbeater (Spen Valley) (Lab)]

Is my hon. Friend reassured, as I am, that although we are focusing here on one conversation, we know from the provisions in the Bill that there will be multiple conversations? There will be a doctor, a second doctor, a psychiatrist, and then oversight by an expert panel. It is not just one assessment of capacity; there are multiple occasions. Does that reassure my hon. Friend, and hopefully other colleagues?

[Dr Opher]

It does reassure me, and I think it should reassure other Committee members. Having eight different people doing a capacity assessment is a very thorough safeguard for capacity. We have gone through the arguments many times in this Committee, but I do not feel that changing the polarity of mental capacity will do anything to make patients in this situation any safer. That is why I do not agree with the amendment. For fear of being interrupted any more, I think I will leave it at that.

[Sarah Olney]

I apologise for arriving late; thank you for calling me to speak anyway, Mr Dowd. I rise to speak in favour of amendment 50, which stands in the name of the hon. Member for Runnymede and Weybridge (Dr Spencer) and to which I have also put my name. I am conscious that we have been through many of the arguments about the Mental Capacity Act today and at an earlier sitting, but I am keen to press the amendment to a vote, because I think it would address some of the issues that have arisen.

The point of dispute appears to be whether the Mental Capacity Act, as it is currently operated for all the purposes for which it is used—I have no doubt that it is a very effective piece of legislation that is widely used and understood by clinicians everywhere, as the hon. Member for Stroud says—is the appropriate measure and tool to use for the Bill. This decision that people are embarking on is like no other, so I think it right and proper to consider whether the Act is the appropriate way to measure whether people are able to make it.

It is useful to reflect on the experience of the hon. Member for Runnymede and Weybridge, who drafted the amendment. I am conscious of the comments that the hon. Member for Ipswich made yesterday about poorly drafted amendments. My understanding is that the hon. Member for Runnymede and Weybridge has extensive expertise in the area; he is an expert in mental capacity assessment, and I dare say that if he were in the room he would have many useful and interesting things to say. That is why I think his amendment bears greater weight, to the extent that one Member’s amendment should be regarded as any better than another’s.

Key to the Mental Capacity Act is the capacity test, which is about the ability to understand, retain, use and weigh the relevant information. The amendment attempts to address what it means to make an informed decision. Dr Annabel Price, who gave oral evidence to the Committee in her role with the Royal College of Psychiatrists, said that people planning to make the decision of seeking an assisted death

“would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are…The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 277, Q361.]

The point, which has come up in previous debates, is whether an informed decision to refuse treatment can be regarded as the same as an informed decision to end one’s life. My personal view is that the two things are quite different, and that a different standard of capacity should therefore be brought to bear on the decision.

I support amendment 50 because it sets out in detail how the Mental Capacity Act should be used specifically in relation to this decision. As I said in an intervention on the hon. Member for Stroud, it would not change the Act or tamper in any way with how it is currently used; it would merely specify the particular ways in which it should be used in relation to the decision.

I hear what the hon. Member said about doctors’ use of the Act, as well as what the chief medical officer said. I am also conscious of what the hon. Member for Bexleyheath and Crayford has said about the variety of experience that he has, as a parent, with professionals’ understanding of the Act. That came across in a lot of the oral evidence. As the hon. Member for East Wiltshire said, the chief medical officer himself had to clarify the remarks that he made to the Committee in oral evidence. The chief medical officer implied that there were different ways of applying the Act depending on the decision to be made, but there are not—that was a very clear clarification. That implies that there is a difference in the way doctors approach the use of the Act. We cannot have a difference of approach when it comes to a decision of such momentous importance as the decision whether someone has the capacity to choose to end their life.

The amendment reflects the fact that there is value in attempting to standardise how the Mental Capacity Act should be used in relation to the decision. That is why we should agree to it: it is important that Members of this House make a clear statement in the Bill about what we expect doctors to do as they approach an assessment of capacity. We should specify the minimum understanding of capacity to choose an assisted death, which includes an understanding of the likely process of all treatment options, including non-treatment and prognostic uncertainty.

In her evidence, Dr Rachel Clarke said:

“I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 80, Q103.]

Doctors have different assessments of their own ability to assess capacity. That is why a standardised approach, as set out in amendment 50, is so important. I stress how important it is that Parliament be the place where the standards for what MPs expect as an assessment of mental capacity are set. We should be the ones to determine them, rather than leaving them to the vagaries of individual clinicians.

The assessment of capacity and the explanation of treatment options to the person considering an assisted death need to include the extent of prognostic certainty about their illness or condition. We spoke yesterday about the difficulty of knowing whether someone has six or 12 months left to live, and of knowing the extent to which they are going to deteriorate. We also covered in detail the relevant and available care and treatment, including palliative care, hospice care or other care. That needs to be part of the conversation about somebody’s capacity to make the decision.

Amendment 50 states that

“a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.”

It would therefore be clear that somebody had assessed the full range of their options. The amendment makes clear a fundamental issue that I do not think is otherwise covered by the Mental Capacity Act, or at least not to this level of specificity, which is that

“the person’s decision to proceed…must be theirs alone and not bound or directed by the views or decisions of others.”

We have talked about the importance of that issue in relation to the Bill as a whole, but it would be valuable to include it in the clause as a specific requirement for assessing somebody’s capability.

Doubts have been expressed across the Committee about whether the Bill goes far enough in assessing the extent to which somebody might be under duress or coercion. Putting such a provision in the Bill, as part of the capacity assessment, would be an important and essential safeguard. Once someone has made the decision to seek an assisted death, is the doctor or assessing person confident that the person could unmake the decision or change their mind at any stage?

[Dr Opher]

As my hon. Friend the Member for Spen Valley said, there are eight different opportunities for assessing capacity in the process, the last of which is before the patient takes the medicine that will end their life. At all those stages, it is possible to stop the process, and the patient is in total control.

I do not disagree with anything in amendment 50, but I believe that everything in it is already in the Bill, under other clauses. I do not think that the amendment would add anything to the Bill; it would actually make assessing capacity more confusing, from a legal perspective.

[Sarah Olney]

What I would say in reply to the first part of the hon. Member’s intervention is that there are plenty of opportunities for the person to change their mind—although I might slightly indelicately point out that there will eventually not be a further opportunity; that is the point of what we are trying to do—but that does not necessarily mean that the person has the capacity to make the right decision at each of those opportunities. That is what the doctors will need to assess.

I return to my earlier point: it is important that Parliament specify, by way of this amendment, precisely what it means by assessing capacity. In the context of all the evidence we heard that there is not necessarily a standardised approach across the medical profession, it is important that the standardised approach be specified in the legislation. Clause 3 is the appropriate place to specify it.

The other major point is that patients need to understand the process by which the assisted death will be enabled. The Bill states elsewhere that it will be by the ingestion of an “approved substance”. It is important that we understand exactly what that means, or what it might mean. We will doubtless get on to talking about the approved substance and the proper legislation around its use.

We did not speak much during the oral evidence sessions about the use of the approved substance, but it is important that people understand that any medical procedure can fail, including with an approved substance, and we do not know how long the substance will take to be effective. Nor do we know what the patient’s experience will be after taking the approved substance. It is important that they understand, to the extent that it is possible for a doctor to give them the information, what they are undertaking.

In his evidence, Professor House said:

“It is a striking feature of the Bill that informed consent is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be…There is no standard informed consent form related to the Bill, for example—of the sort that you would expect to sign if you were having a serious intervention in the NHS.”––[Official Report, Terminally Ill Adults (End of Life) Private Member’s Bill Committee, 29 January 2025; c. 169, Q216.]

He said that informed consent was very underspecified in the Bill. The amendment could start to address that. It is important that people have the capacity to understand what they are undertaking—not just that they are choosing an assisted death, but all the potential attendant risks and complications.

I return to my opening point, which is that it is important that Parliament specify a standard by which mental capacity can be assessed in relation to this specific decision. I feel that I have made the point a number of times, but I will make it once more: we are not proposing to rewrite the Mental Capacity Act or tamper in any way with how it is currently used. We are merely setting a higher bar—a higher standard for how it should be applied in this particular case, because of the very specific nature of the decision that patients are being asked to make in this particular circumstance.

--- Later in debate ---

“significant variation in practice by doctors and low self-confidence in the practice of MCA.”

[Dr Opher]

On tightening capacity assessments, which is what the amendment is trying to do, I would point out that there are a number of amendments coming up that would mandate training for doctors who are registered to assess capacity—for example, amendment 186. In addition, amendment 6 would mandate psychiatric referral if there was any doubt of capacity. Does that not satisfy the hon. Member?

[Danny Kruger]

It pleases me but it does not satisfy me. I am encouraged by it, but I am not fully satisfied. Obviously, it is insufficient. The hon. Gentleman and the hon. Member for Spen Valley put great faith in the training that we are going to introduce. Well, I hope they are right. Let us certainly do as much training as we can— likewise, let us get as much data as we can—but the provision set out is not sufficient, not least because the training will be in the application of the Mental Capacity Act, which we are saying, even if properly applied, has all sorts of problems with it, as my hon. Friend the Member for Reigate explained.

Yes to training and yes to the option of the referral—that should be mandatory, and I think there is a proposal to effect that. Every additional safeguard is welcome. It goes back to my point about whether we are being thorough or simplistic. I am not sure. If I think there are four assessments, but the hon. Member for Stroud thinks there are eight, does that not fail Chris Whitty’s test of being simple? If eight is in fact thorough, would nine not be even more thorough? The suggestion that we have hit it at the perfect sweet spot and that to veer one side is to introduce all sorts of bureaucratic hurdles seems unrealistic. Surely we can apply a little more rigour to this exercise.

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[Danny Kruger]

I would indeed support that amendment; it would go a long way to addressing the concerns that we have here. When we discuss clause 4, I will come on to some suggestions for how we can make sure that people with learning disabilities are properly supported, particularly people with Down’s syndrome.

To finish, I will speak to amendment 50, also tabled by my hon. Friend the Member for Runnymede and Weybridge. If we are going to proceed with the MCA, we need to have it on the face of the Bill, to ensure standardisation —hon. Members have confidently asserted that it happens anyway, although the evidence we have been presented with demonstrates that it does not in all cases. Let us be much more explicit about the requirements that are needed. We should specify the minimum of what needs to be understood for capacity, including understanding the likely process of all treatment options, including non-treatment, and prognostic uncertainty. It is not acceptable, in my view, to have all of that worked out later by clinicians. Parliament must clearly say at this stage what is important.

While Members are looking at the quite extensive terms of amendment 50, it would be good to know what in that list they would object to and why any of it should not be included. It does not change the Mental Capacity Act; it preserves the integrity of the Act. It simply specifies more precisely and gives clear guidance to doctors to ensure that they do the best job they can. Lastly, it states that the patient must have full understanding of the consequences of

“requesting assistance in ending their own life”.

That includes the potential for medical complications at the end. That is a point that has been touched on a little in debate, but I will quickly say a word on that.

It is very important, in my view, that we are clear about what the patient should do, what the doctor should do, what the patient is entitled to do and what the doctor will do, in the event of complications at the end. This is not an abstract question. The Association for Palliative Medicine of Great Britain and Ireland gave evidence to us, stating:

“It is important to highlight the lack of scientific evidence for the effectiveness, failure rates or complications of any ‘approved substance’”,

and pointing out that the proposals in the Bill fall quite short of

“the usual practice of approving treatments in the UK, which mandates careful assessment of drugs and their combinations.”

We do not know how that will be applied in this case. It is a point for later in the Bill how we consider which drugs should be used, but it is relevant at this stage to insist that patients are made fully aware of the drugs that will be used and their potential complications. We often refer to Oregon as an inspiration for the Bill, and the law in Oregon requires the applicant to be fully informed by the attending physician of the

“potential risks associated with taking the medication to be prescribed”.

It might be worth considering that.

Professor House, in evidence to us, pointed out that informed consent—which is obviously a principle of the Bill—

“is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 169, Q216.]

So I think it is important that we specify that those complications are explained to them clearly at the outset.

This is not an abstract point. Sarah Wootton, chief executive of Dignity in Dying—my least favourite organisation—wrote in her book “Last Rights”:

“We have to move away from idealised, sanitised, nursery-rhyme accounts of what death can be…towards truthful, no bullshit, plain-spoken explanations of what could happen.”

I do not think Dignity in Dying applied that test when putting those disgraceful adverts in the tube, showing people dancing round their kitchens anticipating their lovely death, but she is right that we need to be very clear about what actual death can be like with these drugs.

I want to end with a reference to the work of Dr Joel Zivot, an American academic. The only proper study that can be done into people who have been given lethal drugs to die, using any of the drugs that will be used in this case, is of people who have been executed in the United States. Of course it is not possible to do many studies into the after-effects on people who have had an assisted death, but there have been some studies of people on death row. Dr Zivot’s point is that there is real evidence of what looked like trauma, distress and pain suffered by people as they died. Even if they themselves look peaceful—because often the first drug that is administered is a paralytic, so they are rendered immobile, and they may look very peaceful—it is evident that in some cases there is real distress going on beneath that peaceful exterior. We need to do a lot more work on understanding which drugs would be used and what their effects would be, and that needs to be properly explained to patients. All of that would be captured in amendment 50.

[Dr Opher]

We are talking about a whole different area now, but I would say that, as a medical professional, if someone is gaining consent to a treatment it is in their code of practice under the General Medical Council that they explain all these things. We do not need to write it into the Act; that is already in existence. A more general point is that there is a lot of stuff already in the public domain on doctors’ behaviour that does not need to be restated in the Bill. The more we write, the more likely it is that it will be less safe for patients. I would keep it very simple.

[Danny Kruger]

I really want someone to explain this point to me: how can it make it more unsafe for patients to state the safeguards explicitly? How can it possibly make it harder, or more dangerous, if we specify what—as the hon. Gentleman said—is good practice currently, which the best doctors already do? I greatly respect him and his medical practice, but is he really saying that every doctor conforms perfectly to the GMC guidance? There are obviously clear problems with the way in which some doctors operate, and this is uncharted territory. Surely for the sake of doctors, as well as patients, it would be appropriate to specify explicitly how they should conduct these assessments, what communications they should make and what patients should be properly informed of. I cannot see how that makes it more dangerous.