Terminally Ill Adults (End of Life) Bill

Simon Opher Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

[Dr Simon Opher (Stroud) (Lab)]

I am one of those medical practitioners, sometimes known as a doctor. I have been a GP for 30 years, and every year I look after four or five cases related to palliative and terminal care, so I have a lot of experience in this area.

I would like to make some quick observations. First, a lot of patients who are dying of cancer ask whether we can curtail their life and finish it a bit early. That is a very common thing that they ask. I have had two patients go to Dignitas on their own, without family members, because the family members were fearful that they would be arrested on their return. We have been discussing giving a double dose of morphine. I think that almost all doctors in terminal care have probably done this—doubled the dose of morphine knowing that it might curtail the patient’s life. That is a big fudge. It puts me in a very vulnerable position. We need to resolve that.

I think we are getting a bit confused between palliative care and assisted dying. A lot of people who receive excellent palliative care still request assisted dying. They are not mutually exclusive. I totally support what everyone is saying about developing palliative care, because that is really important, but that should not go instead of assisted dying. The things go together. Assisted dying is one of our tools in palliative care, as I see it going into the future.

I have a couple of points about coercion, which people like me need to assess. If someone says that they feel like a burden, that is immediately not a good reason to approve assisted dying. Doctors are trained in assessing capacity, as has been said, but we are also trained in trying to find out the reasons someone wants to end their life. I think it is judging doctors harshly to say that they will not spot coercion. Interestingly, the only change in Australia was that they found that the judiciary review did not add much to the process. Otherwise, there does not seem to be a slippery slope, as long as the legislation is carefully done.

[Joe Robertson (Isle of Wight East) (Con)]

The hon. Member opened by referring to himself as a doctor and medical practitioner. Perhaps he could help with the difficulty I have with the Bill, which I would dearly like to support. There are provisions in it that allow the Secretary of State to bring forward regulations so that the independent doctor can be an alternative medical practitioner. There is also a section that makes the court look like an optional process, so I do worry that there are not protections in the Bill for two doctors. Perhaps he could help with that.

[Dr Opher]

I do think it is right for this Bill to require two doctors and a judiciary review, because this is new legislation and we must be sure that it is safe. These safeguards are incredibly important.

I will finish simply by saying that having been a doctor all my life, I have tried to empower patients to make their own decisions over their healthcare, and this is a great opportunity to do that. I had one patient who had a terminal diagnosis and hanged himself. The family were devastated. It was a horrible way to die. I felt that we had failed as a medical profession. Let us not fail as a Government, a judiciary and the Houses of Parliament. Please support the Bill.

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

Simon Opher Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

It is a pleasure to serve under your chairmanship, Sir Roger. I look forward very much to the process of this Committee and to working with hon. Members to do what we can to ensure that a good Bill is presented back to the House.

I very much respect the points made by the hon. Member for Spen Valley. Nevertheless, I do have some real objections to the motion, which I encourage Members to oppose. The fact is that this debate was due to be held in public—in fact, people have travelled here in the expectation that they would be able to attend and observe our debate on the sittings motion—but last night, for reasons we do not fully understand, a decision was clearly made to table a motion that we sit in private. I would be grateful to understand why that decision was made so late.

My general point is that there is a clear public interest case. The public should understand why witnesses have been chosen and why other people have not, and if there are concerns about the witnesses, they should be aired publicly. This is the only time that the public are being consulted—that experts from outside Parliament have a chance to contribute to our deliberations. I fail to understand why those discussions cannot be held in public. The only argument that I can imagine—and the hon. Member for Spen Valley made it—is that Members might for some reason be uncivil or speak disrespectfully about potential witnesses, which I do not for a moment believe. I am sure that you, Sir Roger, or the other Chairs will keep us in order throughout our proceedings.

We are here to talk about the overall balance and particular qualifications of the witness list. Looking at the witness list that was presented this morning by the hon. Lady, I have very serious concerns, which should be aired publicly, about the list. It includes eight witnesses from foreign jurisdictions, who are being called to give evidence from abroad; all are supporters of assisted dying in their jurisdictions. There are no people speaking against the operations of assisted dying laws internationally. There are nine lawyers on the list—all of them, with the exception of three who appear to be neutral, in favour of a change in the law. There is not a single lawyer against this Bill. Sir James Munby was suggested, but I understand he has been removed. There might be a perfectly good reason for that, but he has spoken against the Bill.

There is nobody on the list from deaf or disabled people’s organisations, but the UN convention on the rights of persons with disabilities recognises the importance of engaging with such organisations in laws of this nature. With the exception of Dr Jamilla Hussain, there is no one on the witness list who can speak to the equality impacts of assisted dying.

[Dr Simon Opher (Stroud) (Lab)]

rose—

[The Chair]

Order. I appreciate that the hon. Member for East Wiltshire, and indeed all members of the Committee, received the final version of these documents fairly late in the day, and I am not unsympathetic to hearing what any Member wishes to say, but now the hon. Gentleman is going rather further down the brief than he is probably entitled to. The motion on the amendment paper is very narrow. The Question is, quite simply, that the Committee should sit in private.

--- Later in debate ---

I am suggesting very minor changes; I am surprised that they should be unacceptable to the Committee. I suggest substituting a small number—two or three—of the witnesses that are being proposed from those foreign countries in favour of others, equally qualified, who take a different view of the legislation. I hope that the Committee will consider accepting some of that.

[Dr Opher]

The Bill as proposed is extremely similar to the Australian law, but it is not similar to Canadian law. Therefore, I do not see that bringing Canadian expertise into the Committee is of any use at all. I also back the right hon. Member for North West Hampshire when he said that in almost all situations we are just replacing one expert for another, so the only contentious bit is whether we have people from Australia in support of or against assisted dying.

A split of 38 to 20, with the other witnesses being neutral, is appropriate and actually reflects the vote in the House. I do not see that as a disadvantage. Are the witnesses really going to change what we are saying? We need to listen to them and learn from them, but having some of them against assisted dying is enough to give us due discipline and ensure we listen to exactly what the problems might be, so I disagree with the hon. Member for East Wiltshire.

[Danny Kruger]

Very quickly, let me say that 38 to 20—two to one—was not the split that happened on Second Reading. There was a much more finely balanced position in the House. I accept that the hon. Gentleman does not want to hear from Canada and I do not blame him—people who are in favour of the Bill are desperate to keep Canada out of it. Okay—let us look at Australia. There are many people in Australia—MPs included, if we could hear from politicians—who continue to profoundly oppose the Bill on the grounds that it is not working, it is dangerous and it is being expanded. Let us hear some alternative views if we are interested in foreign experience.

Terminally Ill Adults (End of Life) Bill (Money)

Simon Opher Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Sir John Hayes (South Holland and The Deepings) (Con)]

The hon. Member for Spen Valley (Kim Leadbeater) is right that this is not unprecedented; in fact, it is the normal procedure for a money resolution relating to a private Member’s Bill to be debated ahead of Report. That is not true of Government Bills, as you know, Madam Deputy Speaker. However, it is really important that we examine the detail of what we are presented with today, which is an open-ended commitment. The wording makes it absolutely clear that

“any expenditure incurred under or by virtue of the Act by the Secretary of State, and…any increase attributable to the Act in the sums payable under or by virtue of any other Act”,

money is so provided. The hon. Lady says that this is not a blank cheque, but it cannot get much more blank than that. Essentially, any moneys associated with the Bill—if it becomes an Act—will be provided.

Pertinent to this vote, we have to ask the question: where will that money come from? Presumably it can come only from existing resource, and one assumes palliative care; it will not come from A&E, surgical treatments or GPs, so it will presumably come from that source. One does not know, of course, but it is perfectly reasonable to ask that question.

[Dr Simon Opher (Stroud) (Lab)]

Will the right hon. Member give way?

[Sir John Hayes]

I will in a second.

On the judicial point, I simply say to the hon. Lady that the establishment of a judicial competence to deal with this system will be resource-hungry. To offer her a parallel example, when I took the Investigatory Powers Act 2016 through the House, we established what was then described as a double lock—it became a triple lock—which required a whole new judicial function to make it happen. It may well be that the same applies in this case, with immense cost and immense pressure on an already overstretched judiciary.

Therefore, in considering those precise matters—not the ethics of the Bill, which are an entirely different consideration, and highly questionable—it is absolutely right and pertinent to ask what this will cost, when, and how it will be delivered. Those questions have not been answered. I scanned the hon. Lady’s speech on Second Reading, and it contained no mention of scale or cost. That is why I am immensely sceptical about what we have before us. While I accept that the money resolution is not unprecedented, it is certainly not desirable.

--- Later in debate ---

[Dr Simon Opher (Stroud) (Lab)]

Will my hon. Friend give way?

[Maya Ellis]

I will not, if that is all right. Sorry.

At the other end of the spectrum, we need to be acutely aware that we are not today expanding overall budgets in the NHS, so what we agree to in this money resolution will put further strain on our already stretched NHS. That means that, for example, St Catherine’s hospice in my constituency, which already requires private fundraising for almost 80% of its income, will have further NHS funding pulled away to accommodate publicly funded assisted dying. It is prudent for us to make clear what we put at risk if we vote through the Bill, having agreed this money resolution. The resolution means that money for palliative care will likely be diminished. The House should consider that in the next stages of the Bill, given what it is supposedly designed to alleviate.

Finally, let us make it clear what we are agreeing to today. I have asked a few times, and never really got a clear answer, why making assisted dying legal has to go hand in hand with a commitment to funding assisted dying on the NHS. Most of us, including me, fiercely protect the idea of an NHS that is free at the point of use, but we risk maternity services encouraging women to pursue induced births rather than planned caesareans, partly because of resource limitations in the NHS. I caution against an agreement to spend money on guaranteeing dignity in dying when we lag so far behind on guaranteeing dignity in birth, and in many other areas.

--- Later in debate ---

[David Smith (North Northumberland) (Lab)]

I would like to raise a couple of practical and principled concerns about the finances around assisted dying. First, on the practical, I welcome the comment from my hon. Friend the Minister that there will be an impact assessment in due course. However, until we see it, we have no idea what the measure will cost. We are being asked to approve a blank cheque for assisted dying. We have heard that the NHS is a blank cheque, but the NHS has a clearly defined budget. At this point, we do not have any sense of what the Bill will cost. If that were the case for any other legislation, we would be shouting about it.

The Bill represents a profound change to the very nature of our healthcare system, and we are simply guessing at the cost. That is not good for the Bill Committee’s ability to scrutinise, and not good for this place, or for the democratic and legislative process. In order to legislate well, we need a firm commitment. I am glad to have heard that the impact assessment will be published before Report. We have heard from my hon. Friend the Member for Spen Valley (Kim Leadbeater) that the motion is routine, and I accept that. However, the consequences are extraordinary, and that is why this is an important moment.

On the principle, whatever the cost, once it is assessed, and despite the Government’s recent financial boost for the hospice sector, palliative care is massively underfunded. The postcode lottery in the provision of end of life care has led to some of the horror stories that we heard on Second Reading. The hospice sector has only 30% of its funding provided by central Government, so this technical stage represents a commitment to taking potentially scarce funding from end of life care and allocating it to ending lives.

[Dr Opher]

Will my hon. Friend give way?

[David Smith]

I do not have time. That opens up the dark possibility of a race to the bottom—to looking for savings in the health and social care budget. Any Government would be tempted, where cost saving is a possibility, to push assisted dying as a cost-saving measure; we have seen that in jurisdictions such as Canada.

Finally, let me say this with humility and respect to my hon. Friends on my left. I fear that the Bill will lead to the marketisation of death and dying. We have learned from other jurisdictions that many medical services and clinicians do not want to be part of the delivery of assisted dying, for reasons of principle or because they fear that they will be sued. Independent private health organisations will have to take over to fill the space. Those businesses will have shareholders and annual reports. They will be driven by the desire to maximise profit, with death for the bottom line. They will advertise and seek to expand their market share.

[Dr Opher]

Will my hon. Friend give way?

[David Smith]

I am sorry; I am almost finished. This could seem like a tangential point to make on a money resolution, but, to summarise this and my other points, I fear the consequences of the relationship between money—this resolution in particular—and assisted dying. Although I will not be voting against this resolution, because I believe in the democratic process, I think we seriously need to consider the relationship between money and this Bill.

--- Later in debate ---

[Antonia Bance (Tipton and Wednesbury) (Lab)]

Last summer’s Labour manifesto included the words

“Fully costed, fully funded—built on a rock of fiscal responsibility”,

and they were words on which I was proud to be elected. Money resolutions are normally a formality, but not this one—not today. This resolution asks us to give a blank cheque to this Bill, which makes me nervous, because that sounds like something that we in this changed Labour party just do not do. When we put forward a proposal for public spending, we know how we will fund it.

[Dr Opher]

Will my hon. Friend give way?

[Antonia Bance]

No, I will not.

In the case of this Bill, we not only do not know how much it will cost or how it will be paid for, but we do not even know what the money will be spent on. Let us think of the questions that we do not know the answers to. What will be the cost of NHS doctors attending the final appointment and waiting while their patient dies? What will be the cost of a second doctor to sign off? What drugs will be used, and how much will they cost? Will assisted dying happen in hospitals, in hospices or in new, purpose-built facilities? How many will there be, and where?

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

Simon Opher Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

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

Q I hear what you have said already regarding capacity. Of course, the Mental Capacity Act relies on the capacity principles. They include the presumption of capacity, the principle that a person cannot be seen as lacking capacity unless all practicable steps have been taken to support them to make a decision, and the principle that a person cannot be seen as lacking capacity merely because the decision is unwise.

I also heard what you said about the scaling of decision making, but within the Bill, in some of those scenarios there is no mandating; the word “may” is used rather than “must”. I want to understand your viewpoint on whether it would provide stronger safeguards if those parts of the Bill were tightened to include “must” rather than “may”, and if the reference to capacity were replaced with a separate definition of “ability”, as proposed in our amendments.

Professor Whitty: I am probably not the best person to ask about the exact drafting of the Bill in terms of “may” and “must”, but I can answer the second part of your question, which is really important.

If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity. It would not be able to do that with just one clause; there would have to be quite a lot of clauses, if I am honest. All systems of this sort are going to be imperfect. The reason why I think it is sensible to base yourself on the Mental Capacity Act is that it is well used and well understood in practice by practitioners every day. Having a system with two completely separate groups of assessment, one of which has never been tested in the courts or used outwith this Bill, would lead to a whole set of potential complications and ambiguities, which are not there at the moment because we have a well-tested mechanism through the Mental Capacity Act.

People should move away from the Mental Capacity Act with some caution, because I think that will cause as many problems as it solves. It is not clear to me what problem people are trying to solve by doing that, given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision. That is the foundation of some of the disquiet that people have had, but it is central to how the Mental Capacity Act works in practice.

[Dr Simon Opher (Stroud) (Lab)]

Q You have already said some words about prognosis, which is causing some anxiety. First, are you happy with a six-month prognostic period? Secondly, the Bill says that death should

“reasonably be expected within 6 months.”

Is that in line with your thoughts on the matter?

Professor Whitty: I think that is a reasonable point in time provided that, in taking that period into account, Parliament assumes that we mean a central view that this is six months, although it might be before that and it might be after. Other times would be equally reasonable, but if you are going to choose one, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder, and there would be some caution.

Notably, in the countries that have chosen to go down an assisted dying route—a variety of different ones have been chosen—a significant minority of people die before they actually get to the point where that occurs because there is uncertainty in both directions. I think that period is as good as any other, but I want people to be clear that this is not an exact science where you can say, for example, “On 20 August.” It is not as tight as saying that a baby is going be born on a certain date. It has a wider spread of uncertainty around it. In the overwhelming majority of cases, that does not mean that it will go on for months or years longer, but there will be some degree of uncertainty.

[Dr Opher]

Q I am interested in the opt-out whereby ethically, doctors can opt out of taking the decision for patients. Would they then need to steer someone towards another doctor, or can they just simply refuse to do it?

Professor Whitty: Duncan may wish to comment for nurses. For doctors, we should be very mindful of the fact that for some doctors, as for some citizens, this is a point of very strong principle indeed, therefore there will be a gradation of people feeling that they can personally be involved in it. I suspect that if they themselves did not feel able to do it—because of conscience or choice, or because they did not feel that they had the necessary skills—the great majority would have no problem referring on, but it might be an issue for some people.

Personally, my view is that we should be able to have the range, provided that people are aware in general that, if one person cannot provide it and then does not wish to discuss it, there are alternative routes. But that really is a matter for Parliament and if Parliament says, “No, actually, that is unfair on the patient, because then the patient is having to go through an extra step,” that is an alternative and perfectly reasonable principle. Parliament is going to have to balance those two principles; that is not for me as a doctor. I just think that that range of opinion needs to be thought through when people are coming to that final parliamentary decision.

Duncan Burton: If I could add to that, again, I think that bit about the wider workforce and how we would support them is really important. We have situations like this already. We have advice professionally around things such as abortions and working in embryo services and fertility, for example, so we need to make sure that the safeguards for our staff are really clear. As Chris has said, our staff will have a range of views and opinions on this, as will the wider public. So the work you do in creating this Bill is really important in terms of the advice that we give to people about signposting and having those conversations. Actually, our clinicians are having conversations every single day about the choices that people have at the end of their lives.

[Sojan Joseph (Ashford) (Lab)]

Q Sir Chris Whitty, you said that not all mental capacity assessments are safe. Do you think that hopelessness and low mood can affect someone’s capacity and that a sudden diagnosis of terminal illness can lead to some of those states—depression, low mood and hopelessness? Do you think that all doctors are capable of identifying those states?

Professor Whitty: I would hope that most doctors are capable of identifying that someone has some degree—or a large degree—of mental health distress, or mental health illness, if you wish. What not all doctors will feel comfortable doing is actually deciding whether that is sufficient to interfere with someone’s ability to make a decision with full capacity. That is where help from colleagues from psychiatry, and mental health more widely, is going to be useful.

But that should be good medical practice, in my view, under all circumstances. This Bill takes it to a high level of need because of the seriousness of the decisions being taken, but that is part of medical practice. Duncan will have discussed with senior nurses, when he when he was operating clinically, “Should we actually get an opinion from a mental health colleague”—either a community psychiatric nurse, if it is that kind of question, a psychiatrist or others—“to make that assessment?”

That is really the question, but I certainly would not want to be in a situation where the fact that someone with a terminal diagnosis will have some degree of low mood in itself just rules them out from any kind of medical intervention—this, or any other. That should not be the case. They have to have access to whatever the state and the medical profession are able to provide—again, obviously, depending on what Parliament decides on this particular Bill.

--- Later in debate ---

[Lewis Atkinson]

indicated assent.

Dr Green: With regard to the specific questions, no, I do not believe that a doctor has to be a specialist in the individual disease at stake to advise a patient about prognosis. I can only refer you back to what Dr Whitty said: that in the majority of cases, it is fairly clear—this applies to capacity, too—but in some cases, it is not so clear. What is important is that the doctor has the ability to seek further advice if they need it; it is not always required.

[Dr Opher]

Q I have a couple of points to make. First, clause 4(5) states that a

“registered medical practitioner who is unwilling”

to go forward with the assisted dying request

“must, if requested…refer…to another registered medical practitioner”.

Are you happy with that clause?

Dr Green: No, we are not, because we know from our survey that some doctors feel very strongly about this. The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to. There is a particular problem with the word “referral”. Doctors would not be able to be obstructive; they have the same duties under good medical practice as they do, for example, with termination of pregnancy requests.

[Dr Opher]

Q My other point follows on from the previous question and is about status. The GMC and the BMA have all specialties of doctors beneath them. Would it be appropriate to have, for example, both doctors as general practitioners, or should there be provision for different doctors as the second doctor?

Dr Green: We have not taken a view on the qualifications of the doctors involved. We had discussions about what grade they should be, for example, but we took the view that their skillset and training was more important than their grade or position.

[Dr Opher]

Q In some legal medical situations, you need to be five years post training before you can have a view. Is that something you would have in both of these practitioners, or is that not necessary?

Dr Green: We did not take a view on that. We thought that training and experience was more important.

[Sarah Olney]

Q Leading on from Dr Opher’s question about the “must refer” clause, you and Professor Whitty both stress the importance of the relationship between the doctor and the patient, yet there may be doctors who feel very strongly against mentioning assisted dying. Given the existence of clause 4(5) and the “must refer”, do you think there is a danger that there might be doctors who would be reluctant to provide a prognosis of six months or less if they thought that that would make the patient eligible for assisted dying, and that simply was not something they could support?

Dr Green: That is why it is important that doctors should be able to opt out at any stage of this. There are doctors who would find it difficult to do that, and it is important that their position is respected.

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

Simon Opher Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Dr Simon Opher (Stroud) (Lab)]

Q Thank you for all giving up your time, with your very high level of palliative care expertise and experience. I am a practising GP, and GPs and district nurses do a lot of palliative care with a lot of advice from you people. I have also noticed that, even with the absolute best quality palliative care, some people have still talked to me about an assisted death, or shortening their death. I would like to hear your comments. Is this more about autonomy than symptom control?

Dr Clarke: I absolutely agree that in a small number of cases, palliative care at the highest level cannot eradicate all suffering, and cannot prevent a person from wishing to end their life and have assistance in ending their life. That is absolutely the case; I would say that it happens surprisingly uncommonly, in my experience, but it does happen.

Autonomy is the crux of the issue for me, because autonomy is predicated on having meaningful choices. Can you actually choose option a or option b? Let us say that option a is high-quality not just palliative care, but medical care in general—district nursing care or social care, for example. If that is not available to you, you are potentially being pushed towards “choosing” option b—the route of assisted dying—not freely and not autonomously, but because option a has been denied to you by real-world failures. We all know about those real-world conditions—we are all familiar with the latest winter crisis, where patients have been dying on trolleys in corridors, etc—that are preventing the actual option of a death in which dignity, comfort and even moments of joy can be maintained right up until the end of life, when that patient is getting the high-quality palliative NHS and social care that they need.

That is the crux of the issue. If you do not have that as a real option for patients, we can say that they are choosing autonomously assisted dying, but actually society is coercing them into that so-called choice because it is not funding the care that makes them feel as though life is worth living. That is why I think many of my colleagues are so concerned about legal change now. It is not because of an opposition to assisted dying in principle. It is because the real-world conditions of the NHS today are such that people’s suffering means that occasionally they will beg me to end their life, and I know that that begging comes not from the cancer, for example, per se, but because they have been at home not getting any adequate pain relief. Once you start to provide proper palliative care, very often that changes.

[Danny Kruger (East Wiltshire) (Con)]

Q I will ask you one quick question, Dr Cox. Dr Clarke said that the capacity assessment was poorly conducted. Do you think that the threshold is appropriate, using the Mental Capacity Act 2005? Assuming that we could conduct these assessments adequately, do you think that the threshold is safe?

Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.

The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.

The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?

In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.

--- Later in debate ---

[Sarah Olney]

indicated dissent.

[Dr Opher]

Q Sir Nicholas, I have great sympathy with your position, but how would you frame this law so that it would cover yourself?

Sir Nicholas Mostyn: I would frame the law to define terminal illness in the way that it is defined here in clause 2(1)(a), but where the “person’s death in consequence” is referred to, I would delete clause 2(1)(b) and substitute “suffering intolerably”.

[The Chair]

Thank you. That brings us to the end of the time allotted for the Committee to ask questions. I thank our witnesses on behalf of the Committee; thank you for your forbearance.

--- Later in debate ---

[The Chair]

We have two minutes left before the evidence session finishes. Dr Simon Opher, please ask a very quick question and perhaps we could have a short response. I do not want to interrupt our witnesses at the end.

[Dr Opher]

Q What was the feeling before this came in among the general population and among doctors, and what has happened since the law has been in place? It has been in place since 2016, I understand. Could you give a brief description of whether there were anxieties before or whether most of the public were in support of it?

Dr Spielvogel: I literally had not formed any kind of opinion on this. When I was in medical school, it was not talked about. We did not talk about it; we did not discuss it; it just literally was not a thing, and then when it became law in California, I still had not really thought of it until my medical institution asked me whether I wanted to participate. I said, “Sure, I will give it a try,” and then with my first patient, I saw how amazingly transformative it was for him and his family. I had seen lots of death before then; I saw how tragic and traumatic it often was and how this was a dramatically different experience, and I became a convert.

Since then, I have seen many other physicians undergo the same journey with their patients. They have been very ambivalent to it until they have a patient who is asking for it. They go through it with that patient who they have known for a long time, and then they come out on the other end realising just how amazing this option is to the people who want it. Again, I am emphasising that this is a choice. For people who do not want this, they do not need to have it. For doctors who do not want to do it, they do not have to do it. But for the patients who want this, it is an incredibly powerful piece of agency.

Dr Kaan: The jurisdictions I work in have quite a bit more experience. In Oregon, of course, it has been legal since 1997, and it has been legal in Washington state since 2008. Both of those laws were actually started by voter referendum, so the general populace at large wanted this, and that is how these laws got started in both of those states. The general population has, by and large,, been supportive, and is growing more and more supportive of this as an option each year as it becomes normalised and clear that this is a practice which is careful, safe and has appropriate safeguards in place.

The medical community has also come along with that. In Washington state, we have now 15 years of practice with assisted dying. When this law was first passed, there was hesitancy in the medical community: this was an unknown, in many regards. We were the second state in the entire United States to pass this law and so the medical community was a bit hesitant. I will say that, in those last 15 years, we have seen a tremendous growth in the support of physicians and the medical community at large in wanting to make sure that this is an option for people and that they have access. Just in my own experience in Washington state—

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

Simon Opher Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Colleagues, if we are to try to get everybody in, I will have to confine Members to one question each from now on. Panel, if you could, be kind and, without denying us the information we need, keep your answers as brief as possible.

[Dr Simon Opher (Stroud) (Lab)]

Q Could you briefly run through the patient pathway? Where does the patient first arrive in the healthcare setting? Who are the two doctors? Indeed, who provides assistance at the end of life?

Dr McLaren: Again, each of our states, as well as the Australian Capital Territory, has different legislation and therefore different processes. In broad speaking terms, say in Victoria, for example, a patient will express their wish to engage in voluntary assisted dying independently, and often they are connected to the state-wide patient navigator service, which will connect them with a doctor to receive that patient’s first request and become their co-ordinating medical practitioner. That doctor will then conduct the patient’s co-ordinating assessment and determine whether they believe the patient is eligible or ineligible. If the patient is eligible, the doctor will refer them on to a consulting doctor, or a doctor who acts as the consulting doctor, for a consulting assessment.

If that process is also approved and the patient is found eligible, they meet again with the co-ordinating medical practitioner to make a written application to engage in voluntary assisted dying. That process then goes to our review board, to ensure that it is compliant with the legislation, before we can apply for a permit to prescribe the medication. The permits are specific to our state; many other states, such as Dr Fellingham’s, do not require a specific permit for individual prescription. The permit will come back within three days, and then we write a prescription, which goes to our centralised pharmacy service. The pharmacy will wait for the patient or the contact person to contact the pharmacy and organise the delivery or dispensing of the medication.

In Victoria, self-administered oral medication will be dispensed to the patient, and that is then their property; they may use it immediately or never use it—that is completely up to them. They do not require medical attendance at that time, although I have provided that on many occasions, sitting with a patient and their family as the patient has taken their medication and died. If the medication is not used, the contact person nominated by the patient is legally required to return the medication to the pharmacy.

If the patient is unable to ingest or digest oral medication, we can apply for practitioner administration, which I believe your Bill does not currently provide for. This authorises a co-ordinating medical practitioner to administer the medication, either via a percutaneous endoscopic gastrostomy feeding tube or by other means, including intravenously, to the patient to bring about their death. I have certainly done that—I do not keep count, but I have engaged in that many a time.

[Dr Opher]

Can I just confirm—

[The Chair]

Order. I did say one question per person; we have to stick to the timings.

--- Later in debate ---

[The Chair]

I call Simon Opher.

[Dr Opher]

Actually, my question has already been asked.

Chelsea Roff: May I respond briefly? I want to address the question. I know it is not your intention for eating disorders to be included in this Bill, and I am grateful for that. When I started our research, I thought, “We just need stronger safeguards.” That was where I began, and after looking at 33 jurisdictions around the world, I have real doubt about whether safeguards are enough; I know how difficult it is to put it on the page, and I am seeing it expand and be applied through interpretation. I disagree with Professor Shakespeare, respectfully, that diabetes is a reversible condition. You cannot go back in time and reverse that condition.

I agree that you are doing this for a noble purpose, and there are members of my family that want this Bill to go through, and yet I emphasise to all of you on the Committee that the question before you is: could this Bill have knock-on effects for some of your most vulnerable constituents? How many deaths are you okay with? If the safeguards fail once, that is a human being who maybe, in a despairing moment, was handed a lethal medication instead of the care, the treatment and the help they needed. That is what we are talking about. You really have to get this right, because those people are depending on you.

[Lewis Atkinson]

Q Mr Amin, given your expertise in representing these cases in the court, can I ask you for your view around the Mental Capacity Act issue regarding eating disorders and other disorders? Obviously, we have heard one version of that. Given your experience of working with UK law to the highest level, what is your assessment of this?

Yogi Amin: I have worked in a range of medical treatment cases over many years, covering different illnesses and conditions, and clause 2 reads fine to me. It works. It is clear. I do not consider that it needs any additional words. I can understand, when we go to court, that cases will come through and they will fall within those definitions, and it will be clear. I do not consider anorexia to come under a terminal illness unless it is right at the end of life, and that does not really fit within the parameters of the Bill, because we are not talking about right at the end of life. We have section 63 of the Mental Health Act, which deals with anorexia, and there is force-feeding that clinicians consider. That is my view on the anorexia side of things.

Doctors will provide the evidence on terminal illness. You heard from the chief medical officer yesterday, and they will provide guidance around all of that. Subsequent to the Bill, there will be secondary legislation and then the guidance. They will provide clear guidance that will then feed into this and the evidence that will be before a judge that says, “Yes, it is a terminal illness, and this is the prognosis” and so on. It is nothing different from what we produce in medical treatment cases before the court at the moment, where the doctors produce expert reports and give evidence. They explain the condition, the prognosis and their decision on capacity, and they explain what is in the best interests of an individual if they lack capacity. As I understand it, the Bill is crafted to produce the evidence as you go along the path here, and then eventually to the judge.

Chelsea Roff: May I add one sentence, because it is related to eating disorders? I would refer to a 2012 Court of Protection case, where a 29-year-old with anorexia was described as being in the terminal stage of her illness and multiple physicians described her death as inevitable. I would also refer to a 2023 case seen at the Court of Protection, which said, “I recognise with deep regret that it will probably mean that she will die.” She was also described as being at the “pre-death stage”. Again, that young woman is still alive and still fighting for services. Although I respect what Mr Amin is saying, and I agree with his interpretation, we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.

Yogi Amin: I do not think they were found to be terminal. They were described by a doctor in a case as being terminal, and that doctor may not have described it properly.

Chelsea Roff: Indeed, but a judge will be relying on doctors.

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

Simon Opher Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

Before calling the first Member, I remind all colleagues that questions should be limited to matters within scope of the Bill. We have to stick to the timings set out in the programme motion. The first session will finish at 12.30 pm, so can we stick to the points and keep them as short as possible, please? Members who wish to ask a question have indicated that, and I will call them in no particular order. I will start with Simon Opher.

[Dr Simon Opher (Stroud) (Lab)]

Q265 I would like to direct this question to Dr Furst. There has been some concern in this country about the efficacy of end-of-life medications. Could you share some of your experience in Australia about how effective they are and any problems you have encountered?

Dr Furst: The medications are completely effective. I have not experienced any failures. One of the things I feel quite comfortable reassuring my patients and their families is that this medication absolutely works.

In terms of oral administration—the default option in South Australia unless the patient cannot consume the medication or has problems with absorption—it puts them to sleep within a couple of minutes. They are heavily sedated, as if undergoing an anaesthetic, and then death ensures—that is, the heart stops and respiration stops. For about 95% of patients, that happens within about half an hour. There is a small, small percentage of patients who will continue to be sedated but circulation will not cease for some hours after that. We warn patients and, more importantly, their families that this may be the case, and that is an enzymatic issue.

The medication it is highly effective. Personally, I have not had any experience where patients have had complications—vomiting, respiratory distress or any other concerns. Certainly in South Australia, those have not been issues that have been reported to us. I think there have been a couple of cases of vomiting elsewhere, but the medication has worked in all cases, as far as I am aware, around Australia as well, so this has not been an issue.

IV administration is also highly effective. By the time the medication has been administered completely, the patient is deceased.

This works—it is peaceful. Patients say to me, “I want to go to sleep and not wake up,” and that is absolutely what happens. It is a very peaceful death.

[Dr Opher]

Q Just to confirm—you have not had any failures of treatment, as far as you are aware?

Dr Furst: There have been no failures of treatment in South Australia, as far as I am aware. I am not aware of any other particular ones around the country that have been heavily broadcast to us.

[Naz Shah (Bradford West) (Lab)]

Q To follow up on that, there is no requirement that the doctor is present when the person self-administers the substance that leads to assisted dying. Am I correct? If that is the case, why does the law not make it necessary for the doctor to remain present until death, because at that point, the doctor would pick up any complications, would they not?

Dr Furst: Every legislation within Australia is slightly different. For South Australia and Victoria, you are correct—well, there is pretty much no obligation all around Australia for a doctor to be present for self-administration. The reason for that is to give individuals autonomy over their death, and over the time and place of their choosing. We in South Australia do touch base with what we call the individual’s contact person to understand if there have been any complications and to check in after the death. A large number of our patients, though, will seek out support from a voluntary assisted dying nurse navigator, who is often present in the house just as a support person. We do also have a lot of feedback from them as to any complications, but the doctor often, or a nurse, will come at a later time to declare life extinct.

The reasoning was that we did not think that there would be complications and we wanted to give people autonomy. We work on a permit system in a lot of jurisdictions in Australia, so people have a permit; they get given their substance and they can take their substance at a time of their choosing. They might have the substance in their house for weeks or months, potentially. Again, there is no obligation to follow through with taking that substance, which we also think is quite important. We know that in Australia, about 30% of patients who have a permit or who are approved for voluntary assisted dying actually decide that they do not want to consume the substance, but it is about giving them that choice and autonomy, and the strength to maybe pursue other lines of therapy.

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

Simon Opher Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

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

Q Professor Hoyano, I am interested to explore your views on the third layer. I understand your view about the Court of Protection, but we have heard in previous evidence, not least from eminent members of your profession, that the Spanish model of a panel of experts might be an option worth examining. In those circumstances, what is your view of the investigatory processes, either for that or for the Court of Protection, or the type of evidence that might need to be adduced? What could be specified in the legislation as a requirement on those people involved in the process?

Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.

If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.

The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.

It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.

This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.

There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.

I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.

[Dr Simon Opher (Stroud) (Lab)]

Q My question is directed to Amanda and Laura. There is a lot of natural concern about coercion with the Bill. We recognise that it is a difficult thing to assess. Would either of you change the wording of the Bill to make coercion less likely?

Dr Ward: Which clause are we looking at?

[Dr Opher]

Now you’re asking. Let me check.

Dr Ward: In the interests of time, let me say that I moved to Queensland a year and a half ago, as I mentioned at the beginning, and took up an academic fellowship at the Australian Centre for Health Law Research. That university was tasked by the Government states of Victoria, Western Australia and Queensland with developing the training for assisted dying implementation there. The modules in that training very specifically go through coercion, how you detect coercion, how you discuss it with patients and cultural considerations around it. They cover everything from capacity to the administration of drugs. They are very robust training modules that healthcare practitioners must satisfy at a pass rate of 90%. We rely heavily on the training to make sure that coercion protection is in place.

[Dr Opher]

It was clause 26, sorry.

Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted.

There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents.

The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential.

The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests.

Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision.

On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.

[Kim Leadbeater (Spen Valley) (Lab)]

Q For clarity, Dr Ward, you are right that clause 34 requests that the chief medical officer submits an annual report. You clearly have many years of experience in this subject. For you, what does best practice look like when it comes to assisted dying, end of life choice and end of life care? That is what we are all aiming for in our deliberations. How do we keep it patient-centred?

I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?

Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.

I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.

You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.

--- Later in debate ---

[The Chair]

We have two more minutes for questions and answers.

[Dr Opher]

Q Another hon. Member has asked my question, but I have another. We heard yesterday about domestic violence and elder abuse. Does the legislation need to be tightened around that type of area—the coercion of older people into taking their lives early, potentially for financial benefit?

Dr Ward: That picks up on the previous question, which my learned colleagues answered. Good legislation sets a baseline and a legal framework. You can take a kitchen sink approach to legislation, and you will end up with something that is completely unworkable in practice. There is an awful lot that guidance needs to pick up and should pick up. I understand that only certain things are appropriate for secondary legislation, but you should not try to legislate for every eventuality in a Bill.

On my reading of the Bill, there is nothing that prevents a multidisciplinary team from being involved with this. The Bill sets the baseline: there must be a minimum of two doctors. What happens in practice—and this should be picked up in guidance and secondary legislation—should be developed in conjunction with professional bodies: clinicians, allied health and social work. They are the appropriate people to develop that guidance, not legislators. I would say, “Be cautious about how much you put on the face of the Bill, because you might end up with something that is unworkable.”

[The Chair]

I call Naz Shah to ask the final question.

--- Later in debate ---

[Tom Gordon]

If you have systems where assisted death is offered outside the healthcare setting, as in some of the countries around the world that you have mentioned, how does that limit people’s access to it? Do you think that has an impact?

Professor Preston: I think it almost enhances their access to it. At the moment, they get lost in the system. They are usually trying to find these two magical doctors—in a lot of countries, you still have to find those two doctors. Most doctors, even if they approve of the idea of assisted dying, do not want to be part of it. They might assess, but they might not prescribe. They might prescribe, but they would not administer. Trying to find those doctors to do it is really quite challenging. That is what we get back from the bereaved family interviews. How do you navigate a system where you cannot access the people you need to get to? People go doctor shopping—they are going to multiple doctors until they get the right answer.

If you keep it safer, outside of healthcare, people can talk to their doctor—they will mainly talk to their nurses, because they are the ones who do end-of-life care predominantly—and they can say, “Actually, that is not something we can do, but if you want to see, we have a stand with information about it. This is the service you can go through.” It is the same with the GP—things like that. I think it might actually make it easier for people to navigate. That is where I came to the idea of keeping it outside. It is a supportive way for patients and families because, on top of all this, they are dying. They are having a really difficult time and we are trying to get them to navigate services that are incredibly difficult when you are trying to find two doctors.

Just finally, on top of that, it is quite secret who does this. Doctors do not want to tell people. I have had people who do this—who might just assess and may not prescribe or administer—and they do not want people to know in palliative care because it does not go well for them. They are concerned that people will not like it. I do research in this area, and some people think that means that I am trying to push for assisted dying. I am not; I have a neutral stance. I will say things pro; I will say things against. But it is quite difficult for people involved. There is a bit of a taboo—there is a secrecy. It makes it even harder to say in the Bill, “Recommend another doctor.” It will be a challenge to find that person.

Dr Richards: May I add something? The evidence suggests that one of the implementation challenges with assisted dying is finding doctors willing to participate—consciously participate—in this practice. However, I think what you are asking there is about a more Swiss model of assisted dying. There is a reason that the Swiss model of assisted dying has stayed in Switzerland and gone nowhere else—it has not transferred or translated to other jurisdictions, because of its uniqueness and the practical challenges of disentangling it from a healthcare system.

It is important to recognise that, but we are also talking a little about disentangling assisted dying from palliative care. It is important to recognise that the majority of people who request assisted dying—who receive assisted dying—are within palliative care. They are already in that, as I am sure you have heard already. To disentangle assisted dying from the specialist communication around end of life would seem to be a self-inflicted problem of design, in my view, because it is safest being held there by the experts for those who want to get involved in it. It is safest being held in the healthcare system. As I say, there is a reason why the Swiss model is the only model where that happens outside a healthcare system. That is localised to Switzerland.

[Dr Opher]

Q I would just like to ask Claire about medication—not specifically the drugs and everything, but clause 18, “Provision of assistance”. We have heard that in Australia the medication is left with the patient, whereas under this legislation the co-ordinating doctor brings the medication to the house or the place where the patient wants to end their life. Do you feel, having seen the Bill, that that is safe, or do we need to amend it in any way?

Claire Williams: Again, those safeguards would need to be in place. There would be concerns if they were not actually giving the drug to the patient, and seeing the patient take the medication. Yes, robust safeguards would need to be in place.

[Dr Opher]

May I ask a further question, Mrs Harris?

[The Chair]

Could you make it a supplementary? I want to get Kim Leadbeater in, and then we can come back to it.

[Dr Opher]

Certainly.

[Kim Leadbeater]

Q We have heard a lot from witnesses this week about safeguarding. That is something I am keen to pursue. The Bill has a significant number of safeguards already, but is there anything else that you think we could add? I think all on the Bill Committee are interested in hearing such ideas. In particular, we are thinking about how we can protect people, such as people from disadvantaged backgrounds, older people—Dr Richards, I think you have experience of working with older people—people from a range of different backgrounds, and people with disabilities, so that we keep the Bill very much focused on the people it is designed to help, who are terminally ill people with less than six months to live, while addressing more of the broader concerns about some of the inequalities in society.

Dr Richards: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust.

One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.

--- Later in debate ---

[The Chair]

I call Simon Opher.

[Dr Opher]

I think that my question has been covered by my hon. Friend the Member for Bexleyheath and Crayford. I just wanted to be sure that we were secure if the doctor was not in the room, but that has been answered.

[Naz Shah]

Q My question is to Dr Richards. I will get to where I need to get to, so bear with me. You talk about this being a very explicit conversation, but I would argue that that is not entirely true. We are talking about a set of doctors who will have opted in to have that conversation; not all doctors will do that. We have also had evidence from people suggesting that doctors and lots of other people would leave hospice care if assisted death was provided on the NHS. Yesterday, we had care providers telling us that if people engaged in providing voluntary assisted death, they would leave those hospices. So it is not quite as explicit as what you are suggesting, is it?

Dr Richards: It would have to be. Those examples that you have just given would not mean that it was not an explicit conversation.

--- Later in debate ---

[Dr Opher]

Q Liz, you spoke about excellent palliative care. What were the reasons, do you think, that your brother wanted to end his life? It did not sound as though he was particularly depressed.

Liz Reed: No, he absolutely was not depressed.

[Dr Opher]

And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option?

Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.”

He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”

[Kim Leadbeater]

Q Thank you to the three of you for coming here this afternoon and telling your stories. I know how hard it is to tell your story over and over again. I think it is important to reflect on the fact that we have had a lot of talk this week about amendments, clauses and various other technical details, but this is the reality of the subject. Thank you so much for sharing your stories.

Liz and Julie, I am interested to know whether you think any aspects of the processes that you went through in Australia and in Spain could have been done better or improved. Is there anything from your experiences that we could learn from to enhance what we are trying to do here?

I also have a question for all three of you—and Pat, goodness me, to come here and tell your story after everything you have been through is unbelievably brave, so thank you. What impact did these different types of death have on your grief and on bereavement? We are talking about different types of death, so I think it will be helpful to think what that looks like for people.

Julie Thienpont: It is a very good question, because I think it did impact my grief. There is not anything that I would change, for definite, about that, but I think I mentioned that I had not tried to talk Guy out of it the first time around, but I did say, “Don’t be so hasty, because you’re not as sick as you could be.” He was still getting up and dressed every day and managing pain, so we had that discussion. On the only day that I ever knew him to stay in bed a little bit longer, I knew he was thinking about phoning to say that he was ready, and he called me to him and said, “Come and sit with me. I want to ask you two things.” The main one relevant to this is: “Don’t try and talk me out of it this time. I’ve made the decision. Don’t try and talk me out of it, because I don’t want you to be impacted in that way.” The second one was to “be strong”.

Both those things have impacted my grief, because I was so strong for 12 whole months and I just thought, “Yes, we’ve gone through that. It’s been great, and”—not “great”. Sorry, I am using the wrong terminology, but for me, it was so good to know that he died so peacefully and he was at peace with himself. That happened and I thought, “Right, now I’ve got to do the ‘be strong’ bit,” so I did that. I did want to talk him out of it again, but I did not, and I was very strong, and then all of a sudden, one day, grief did start to creep in, obviously. Suddenly I thought, “Hang on, he’s not coming back.” That is a normal grieving process, but it held off a little while.

The pathway that the grief I experienced took was that every day I had a different memory of us sitting somewhere, being somewhere or doing something. During the last months that we had together, knowing that he was going to die—sorry to sound like a bit of a romantic—our love intensified so much. You know that everything you do, it is probably going to be the last time you do it. It is almost like an unbreakable bond between you: you are both in this situation together and you are going to get through it, you are going to be strong, and you are going to be there for each other. I think that carried me so far, because those four months that he lived were the best four months, in the sense of our closeness and how supportive and caring we were for each other. It makes me smile now. When I think of his passing, I smile. Yes, I do get upset and I miss him a big lot, but I smile because everything worked out the way he wanted it to.

--- Later in debate ---

[Sarah Olney]

Thank you for answering that.

[Dr Opher]

Q I have been fascinated by this discussion, so thank you all. It strikes me that we have spent a number of days looking at the other end of this, if you like—coercion and capacity and that sort of thing—but I am concerned that we had a judge with Parkinson’s who would not be allowed through this, like your sister with MND. I just think we should consider as a Committee whether we need to make any amendments on these things, and also on self-administration. I wondered whether you thought we should widen the Act. I presume you have read some of it, at least.

Pat Malone: As I mentioned to Mr Kruger, I am loath to meddle in any way with the Bill. I think that as it is the Bill is the best we can do at this time.

[The Chair]

Order. I am going to let you continue, but that question is out of scope. Is there anything else you want to say, Mr Malone?

Pat Malone: I have said that as far as meddling with the Bill is concerned, I would like to see it pass as it is without too much delay.

--- Later in debate ---

[Jack Abbott]

Q My question is also for you, Dr Price. The Royal College of Psychiatrists has been really clear in its statement that we as parliamentarians have to consider the outstanding questions about a person’s capacity to decide to end their own life, and whether it can be reliably assessed, and you particularly cite the implications for those with mental disorders, intellectual disabilities and neurodevelopmental conditions. Do you believe that anyone requesting assisted dying should be assessed automatically by a psychiatrist, or that certain criteria should have to be met for a psychiatric assessment to be undertaken?

Dr Price: If I take you to thinking about what an assessment of capacity would normally look like, if we think about clinical practice, a psychiatrist would normally get involved in an assessment of capacity if the decision maker was unclear about whether that person could make a decision. The psychiatrist’s role in that capacity assessment would be to look for the presence of mental disorder, and at whether mental disorder was likely to be impacting on that person’s decision making. They would advise the decision maker, and the decision maker would then have the clinical role of thinking about that information and assessing capacity with that in mind.

Psychiatrists sometimes assess capacity and make the determination, but it is usually about psychiatric intervention and issues that are within their area of clinical expertise, such as care and treatment, capacity assessment around the Mental Health Act 1983 and whether somebody is able to consent to their treatment. In the Bill, I am not absolutely clear whether the psychiatrist is considered to be a primary decision maker on whether somebody should be eligible based on capacity, or whether their role is to advise the decision maker, who would be the primary doctor or one of two doctors.

Should a psychiatrist be involved in every case? If there is a view that psychiatric disorders should be assessed for, and ideally diagnosed or ruled out, in every case, a psychiatrist might have a role. If they are seen as an expert support to the primary decision maker, that decision maker would need to decide whether a psychiatrist was needed in every case. We know from Oregon over the years that psychiatrists were involved very frequently at the beginning of the process, and now they are involved by request in around 3% of completed assisted dying cases. We do not have data on what the involvement is across all requests.

[Dr Opher]

Q Conveniently, my question follows on from that. On our first day of evidence, we had Chris Whitty, the chief medical officer, saying that when you are assessing capacity, the vast majority either clearly have capacity or clearly do not, and there is a small section in the middle. Michael, would you say that a role of a GP would be to inform those definite yeses and definite noes, and then they would perhaps not have the skills for the intermediate ones? I am just suggesting that.

Dr Mulholland: As GPs, we can assess capacity. In this situation, the college’s position would be that we feel the GP should not be part of the assisted dying service, so we would see a standalone service that we can signpost our patients to. The GP role may go on to a different route afterwards, and it may be part of other things with palliative care and looking after the families. We think that some GPs may want to be involved and take that step, but we know from our membership surveys that we have had at least 40% of members in the past who would absolutely not want to have any part in that.

Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient. We could discuss that these things exist, but we would not be doing that capacity assessment. Obviously, to give patients information about what they are going to, as you know, we would assess their capacity to take that information in, retain it and do the right thing with it for them. We would be doing that level of capacity assessment, but not further on in the process, where you are assessing whether a patient is able to make a final decision. I think Chris Whitty referred to the various levels of capacity. As the decision gets more difficult and complex, you want a greater understanding with the patient that they really know the implications of what is going on, and we just would not be doing that in general practice.

[Daniel Francis]

Q My question is to Dan Scorer. In the Mental Capacity Act 2005, the definition of “capacity” means that many people with a learning disability are presumed to have capacity. We have heard comments from others on the panel, and I am trying to understand whether you feel that the existing provisions in that Act would cover those with a learning disability or whether you would need that greater advocacy, as you discussed, or something different from the Act. Do you have any comments on the fact that family members—lifelong carers, in many cases—would have no requirement, under the Bill or the Act, to be involved in the decision or to comment on their family member’s capacity?

Dan Scorer: The Mental Capacity Act starts from the principle of presuming capacity. The question would be whether, when someone who is terminally ill puts themselves forward for assisted dying, doubts start to emerge about whether they actually have the ability to make that decision in terms of whether they can understand, retain or weigh the information and communicate their intentions.

As I mentioned earlier, our concern is how those discussions around assisted dying are initiated. For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, “What do you think about assisted dying—is that something you might want to consider?” could move them towards or into potentially accepting a course of action that they had never considered before.

That is why I was saying that it is about having advocacy support around that discussion and, as you were saying, about the role of families. Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate—that would probably be our preference—who is specifically trained to support people with a learning disability who are considering their end-of-life options.

There is a lot that could be done in addition to what is in the Bill already to potentially much better support people who are considering end-of-life options and to have other professionals who could input into multidisciplinary discussions, potentially around capacity assessment.

--- Later in debate ---

[Danny Kruger]

Q Following straight on from that, do you imagine it to be an NHS-funded service if it is outside core general practice? If so, what might the implications be for resourcing, assuming that it was funded out of general NHS resources? In the practical terms of the Bill, what do you think of the provision that the co-ordinating doctor must remain present with the person until they die, bearing in mind that that might take some hours? I am interested in your view on the implications for resourcing the service.

Dr Mulholland: Fortunately, that is not the RCGP’s bit, but I think we would be very much concerned. In our principles, we were clear that we thought that there should be no reduction in core services in general practice, nor should there be any reduction, if the Bill goes through, in funding to palliative care services, which we know are often struggling as well. This should therefore be additionally funded. Whether it occurs in the NHS is not our decision, but we would be very concerned about health inequalities creeping into any part of the health service. We are aware of the differential that occurs in lots of things—life expectancy has come out again in recent reports between different parts of the country and people who live with different levels of poverty. If the Bill comes through, we will want to make sure that there is not a differential in who is able to access it. Whether that says that it should be NHS or private I am not sure, but that needs to be considered as part of whatever comes out of this.

[Dr Opher]

Q I would like to go back to the point about depression, because it is common. In the general population, 20% are on antidepressants—on SSRIs. GPs diagnose the vast majority of depressions. Dr Mulholland, what are your thoughts on whether checking for demonstrable depression should be a standard part of the assessment before you refer people into the service? The idea of getting a psychiatrist who wanted assisted dying to see every case, given how difficult it is to see a psychiatrist in the NHS at present, would really limit the service.

Dr Mulholland: We see a lot of people with mood disorders of different types and of different severities. Many people with depression who are treated with antidepressants carry out full-functioning jobs and lives because of the treatment that they have and because their depression is not of that severity. If someone had very severe depression and we were accessing our psychiatric colleagues, that would be a different decision, and perhaps it is not something that would happen at that point. Most people with depression, anxiety and other mental health problems would have capacity, because we would presume it under the Mental Capacity Act, so it is not necessarily an obstruction to people being referred for anything.

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

Simon Opher Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Sarah Olney]

That is a very interesting intervention. I cannot comment on that because I have no knowledge of how the Mental Capacity Act was drafted or the evidence that was taken.

[Dr Simon Opher (Stroud) (Lab)]

I do believe that the Mental Capacity Act enables people to make very serious decisions, such as stopping cancer treatment, so I would absolutely dispute the hon. Lady’s interpretation of it.

--- Later in debate ---

[Sarah Olney]

I have no intention of rewriting the Mental Capacity Act. It should stand exactly as it is and be used for the purpose for which it is intended. That is not the intention behind my amendment, which merely proposes that we should assess people’s ability to make the decision and not just their capacity. Many of those who provided evidence demonstrated that merely testing somebody’s capacity to make a decision is insufficient in this case.

[Dr Opher]

We also heard evidence that if we make this more complicated and introduce more terms into the Bill, then there will be less safeguarding for patients. That is why we are all here: we are trying to make this Bill safe for patients seeking assisted dying. Changing it from the Mental Capacity Act will make it less safe.

[Sarah Olney]

I heard Sir Chris Whitty in particular say that it would be preferable to have a more straightforward Bill that did not have too many bureaucratic hurdles for people to overcome. That was why he was keen for the Mental Capacity Act to be retained. However, I tabled the amendment precisely because, when people are thinking about whether assisted dying is an appropriate decision for them, I do not think that it is safe for them to be judged merely on the basis of their capacity. It is by no means my intention to increase bureaucracy; I am merely proposing that the Act is not sufficient in this case.

--- Later in debate ---

[Sarah Olney]

I am grateful to the hon. Member for his intervention, but I am not proposing to change any legislation other than the Bill before us. All the other legislation to which he refers should remain precisely as it is, and for the purpose for which it was intended. He asks who is to say whether someone is making a wise or unwise decision; that is the job of the people who are instructed to provide assessments under the Mental Capacity Act. As was clear from my response to the hon. Member for Reigate, if someone has been assessed as having capacity, there must not be any further interference in their decision-making process, even if there are distinct concerns that that person may be deciding to end their life not purely because of their terminal illness but because they are suffering from depression. There is no other mechanism in the Bill to enable that further safeguard.

[Dr Opher]

I use the Mental Capacity Act almost every week in my work. As Chris Whitty said, in the majority of cases, whether someone has capacity is clear and indisputable. For a narrow proportion of people, it is more difficult to decide. The Bill takes account of that by using a panel to decide on those difficult cases of capacity. I would insist that most cases are very straightforward.

[Sarah Olney]

I have to ask the hon. Gentleman to clarify that. When he says he uses a panel, is he referring to the new amendment that has been proposed? I have not seen it yet and cannot comment on it, and have no idea if it will be adopted.

[Dr Opher]

If we are not sure about capacity, we must refer to psychiatry, so that a specialist organisation can make a more detailed assessment. However, most people do not fit into that category. Most people clearly have not got capacity or have got capacity, so this is a very narrow cohort.

[Sarah Olney]

If I may say so, the hon. Gentleman’s intervention precisely illustrates what other hon. Members were raising as points of order earlier. How can we properly scrutinise the legislation when new amendments are being tabled at the last minute that potentially change the entire nature of the legislation that we are attempting to scrutinise? It is very difficult then to speak about the amendments that have already been tabled.

--- Later in debate ---

[Sarah Olney]

I say to that what I have been saying throughout: a test of mental capacity is not sufficient for this Bill. For example, the Royal College of Psychiatrists states that the Mental Capacity Act

“is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of”

for decisions relating to assisted dying or assisted suicide—

“and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”

I believe that what the Royal College of Psychiatrists means by “novel context” is that no legislation of this type has been framed before and we do not have any precedent to guide us in terms of what an appropriate determination of capacity might be.

[Dr Opher]

I apologise to the hon. Lady for my continued interruptions, but I want to put across some important points. In our medical system, the Mental Capacity Act is currently used to test capacity in cases of withdrawing life support. Does the hon. Lady not agree that that is on the same level as assisted dying?

[Sarah Olney]

I have a suspicion that the hon. Gentleman may have made that point already in one of his many interventions. Withdrawing treatment is not the same as someone making an informed wish to have their death assisted. That is why we need to be very careful about considering whether the Mental Capacity Act is appropriate for that kind of decision. That Act is being used in a way it was not designed for. To use this definition of “capacity” is to accept the premise that this is just like any other treatment option and not qualitatively different, and fails to recognise the complexity and gravity of the decision.

The Bill also fails to consider that there may be a risk of assessor bias—that sometimes it may well be that a doctor who makes an assessment may well have their own views about the suitability of assisted dying as an option for that particular patient. They may be in favour of it, or they may be against it. If that were to sway them towards making an assessment against capacity, that could have lots of serious implications for the patient.

I have proposed amendment 34 because I think it is the best way forward at this stage, given the variety of evidence we have had and the real difficulty for us in this room of making an appropriate determination of the extent to which the Mental Capacity Act’s use may be modified for this purpose, or of coming up with something entirely new. I think the best way forward is to give the power to the Government—to the Secretary of State—to define the term “ability” in relation to this legislation at a later date.

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

Simon Opher Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Dr Simon Opher (Stroud) (Lab)]

I would like to bring the Committee back to a certain amount of reality. What we are talking about is how we can assist clinicians to assess coercion and pressure. I like the way we have discussed this in a very good way, trying to make the Bill safe, but would the hon. Lady’s amendment make that any easier for the clinician? I do not think it would. The Bill is very clear as it is. I do not think there will be any implications if there are further amendments, because the Bill provides a statement of what we do; as a clinician, I would understand and be able to apply that.

[Rebecca Paul]

The hon. Member is absolutely right that the amendment would not make it easier for the clinician. My job is not to make it easier for the clinician to determine that someone is eligible for assisted death. It should be a robust, rigorous and well-considered process.

--- Later in debate ---

“Manipulation” is a term that we have in law. It is mainly used in relation to fiscal crime, but also in relation to genetic science. I argue that “manipulation” should and could be included in the Bill.

[Dr Opher]

We are all in this together. We all want the safest Bill possible, so we should defer to the legal side to form the safest language. I am not a specialist on this legal subject but we all want the same thing and we are arguing about words on which we perhaps just need to take advice, to make the safest possible Bill.

[Juliet Campbell]

rose—

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

Simon Opher Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Danny Kruger]

I rise to briefly speak in support of amendment 281, moved by the hon. Lady and tabled by the hon. Member for York Central (Rachael Maskell).

At the moment that somebody seeks assisted death through a consultation with a doctor, they stand at a fork in the road: they can either proceed towards the assisted death about which they are inquiring, or turn towards other treatment options. On Second Reading, almost every Member on both sides of this debate stated that we need more palliative care, and everybody emphasised the value of providing good palliative care to all who need it. The amendments in this group would simply give force and power to the clear call of the House of Commons for a strong, realistic palliative care option as an alternative to assisted death, and I would be astonished if members of this Committee chose to vote them down. They give clear expression to the will of the House: that palliative care should be offered, and that it should be apparent that a patient has clearly understood their palliative care options.

I implore members of the Committee to consider what they would be communicating if they rejected the amendments. They would be saying that this is not a fork in the road, but a one-way street: there is only one way that someone is likely to go, and that is onwards to an assisted death. If that is the will of the Committee, it should vote the amendment down. If it thinks, as so many people said on Second Reading, that there should be real choice, and that palliative care should be explained and properly available, then I implore the Committee to support the amendment.

[Dr Simon Opher (Stroud) (Lab)]

I thank my hon. Friend the Member for Bradford West and the hon. Member for East Wiltshire for their speeches. I also thank my hon. Friend the Member for York Central (Rachael Maskell), who is a fantastic campaigner for excellent palliative care, for tabling the amendment.

I cannot disagree with almost everything that has been said: people need to be given real choice, and they certainly need to be given the choice of palliative care. As the hon. Member for East Wiltshire said, people need to be offered palliative care. That is absolutely crucial to the Bill. However, the amendment would make it a requirement that a patient has met someone in palliative care. What would happen to a patient’s autonomy if they did not wish to see a palliative care doctor? Would they be excluded from the process? It is incredibly important that people have real choices with respect to palliative care in this process.

I note to the Committee the fact that clause 4(4) states:

“If a registered medical practitioner conducts…a preliminary discussion”

with a person, they have to also discuss with that person

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

That is in the Bill. It needs to be offered.

I have had patients who have not wished to see a palliative care consultant. It is their autonomy to make that choice. I do not think that it is a wise choice—I think almost every doctor would try to push them towards palliative care—but we must not exclude those patients from accessing an assisted death if that is what they want. That does not mean that people should face a fork in the road, as the hon. Member for East Wiltshire just mentioned. This is not an either/or: sometimes people can receive excellent palliative care and still request an assisted death, as my hon. Friend the Member for Spen Valley said.

I absolutely agree with many of the things you have been saying. I totally agree that we need better palliative care—although, actually, we have pretty good palliative care. In 2017, palliative care in this country was the best in the world, and we need to rebuild back to that again. But having a requirement that someone has to have seen a palliative care consultant will weaken the Bill. I urge the Committee to reject the amendment.

--- Later in debate ---

[Rebecca Paul]

Thank you, Mr Efford. I am perplexed as to why some of the straightforward improvements to the safeguards have not been accepted. That should give us all pause for thought. If everyone here wants this to be the safest assisted dying service in the world, we must learn from other territories and improve the safeguards. Our priority should not be to make the service as accessible as possible, with as few barriers as possible, or to make it as easy as possible for medical practitioners to sign off. Time and again, throughout our proceedings, the importance of autonomy has been given as the reason why amendments cannot be accepted, but surely that must be balanced against what is in someone’s best interests.

It is clear that in other areas of medicine a best interests approach is taken, for example under section 63 of the Mental Health Act 1983, which states:

“The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering”.

A patient can thus be deemed to have capacity, and yet still receive treatment that they have refused, for example in the force-feeding of a young girl with anorexia. Those who argue for full autonomy would no doubt rail against this best interests approach. However, I suggest that it is always worth considering what we would want to happen if it were our daughter.

This is not an easy balance to get right—I completely concede that—but right now the Bill has no best interests component. That means that if anyone inadvertently qualifies for assisted dying but should not, for example an anorexic girl who has refused treatment, there is no safety mechanism to take her out of scope. The amendment tabled by my right hon. Friend the Member for Braintree (Mr Cleverly) would have gone some way to addressing that.

Clause 1 will profoundly change how society views suicide. Data from overseas territories indicates that introducing assisted dying can actually increase the number of unassisted suicides. In Oregon, whose system this Bill is specifically based on, non-assisted suicide has increased by a statistically significant amount. That demonstrates the seismic shift in attitudes that accompanies this, so when we tell our young people that suicide is not the answer and to seek help, we must do so knowing full well that the key message will be undermined by the availability of an assisted dying service, which may be plastered across billboards and advertised on daytime TV.

[Dr Opher]

May I say that this is skewed statistics? There is no statistical evidence that suicide increases in jurisdictions that have assisted dying.

--- Later in debate ---

[Dr Opher]

There is a lot to talk about in this group and I thank you, Mr Efford, for calling me to speak. I would also like some confirmation about the term “medical condition”, and I agree with the hon. Member for East Wiltshire that we need to absolutely nail that. I am still to be convinced on the question of a condition that does not come under illness or disease but would come under “medical condition”, so I agree that we need to be very clear about what that means.

Frailty is very often diagnosed in older people and I fear that “medical condition” could be equated with that, which would open up the Bill. We need to decide whether we want to do that. Personally, I would not support that in any way. If this is an opening for that, we need to close it, so I agree with the hon. Member in that respect.

Some of the other amendments do not materially add anything to the Bill. On changing “an inevitably” to “a typically”, I do not think that would change the Bill—in fact, I think it would weaken it slightly, so I would not support amendment 123.

Both amendment 11 and amendment 181 talk about how we can exclude mental health issues as a cause for seeking assisted dying. My personal feeling is that the Bill is strong enough as introduced to exclude that. I point people to clause 2(3):

“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—

(a) a mental disorder, within the meaning of the Mental Health Act 1983;

(b) a disability, within the meaning of section 6 of the Equality Act 2010.”

I think that is pretty tight; I do not think that people with anorexia could be given an assisted death under this legislation. That is my personal view, and I am happy to be persuaded otherwise if the whole Committee thinks we need to tighten up the measure significantly. It is important to make that very clear so that the Bill cannot be amended away from what we wish it to be. I think all of us would say that we do not want patients with anorexia to be able to access assisted dying—I have not spoken to anyone who does not agree—so the question is how we nail it down in the Bill.

[Sarah Green (Chesham and Amersham) (LD)]

I have great sympathy with amendment 11 in particular, which is clearly motivated by a desire to ensure that having a mental illness or disability alone does not qualify someone for an assisted death under the Bill. It is worth saying that clause 2(3) already does that and, therefore, the amendment is not necessary. However, the hon. Member for Spen Valley has tabled amendment 181, which further tightens that language. In my view, amendment 181 strengthens the Bill by simplifying the language to make it absolutely clear that a person is not considered to be terminally ill if they have a mental disorder or a disability alone. The chief medical officer, Professor Whitty, encouraged us to keep this simple, and that is precisely what amendment 181 does. Therefore, I support the amendment.

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

Simon Opher Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

I have sympathy with amendments 399 and so on tabled by the hon. Member for East Wiltshire. On the understanding that I await Ministers’ input, a constellation of illnesses, diseases and so on can, combined, lead to an inevitable end of life, and it might be useful to have clarification on that. It is no one’s intention to widen the provisions, and if this is an example of where we, as a Committee, can work constructively together to ensure that clarification is given and the will of the House as expressed on Second Reading is followed, we can potentially do that.

[Dr Simon Opher (Stroud) (Lab)]

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

[Danny Kruger]

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

[Dr Opher]

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

[The Chair]

I have received a manuscript amendment from the hon. Member for East Wiltshire that he wishes to move. As the hon. Gentleman knows, a manuscript amendment requires a very high bar and exceptional circumstances. I do not believe that exceptional circumstances are present, and he will be aware that further amendments can be proposed to the clause for consideration on Report. That is my decision on the matter.

--- Later in debate ---

[Rebecca Paul]

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

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

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

[Dr Opher]

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

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

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

[Rebecca Paul]

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

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

--- Later in debate ---

[Naz Shah]

It is absolutely what is guiding me. I am sure we all know people who were told that they had six months to live and have lived a lot longer. We have heard stories of people who were told that they had six months to live and lived beyond 20 years more. We have heard lots of tragic cases, for example in the world of Dr Jamilla Hussain, that would really benefit from the Bill’s being available to them. But equally, there are other families whose loved ones have survived—and not just survived, but thrived for years and years. In fact, a close friend of mine, who happens to be a constituent of my hon. Friend the Member for Spen Valley, was diagnosed not to live very long. It was an emotional time for her daughters. Eighteen and a half years later, she is still alive, well and thriving.

[Dr Opher]

I must admit that I rejoice in these stories—it is fantastic that these things can happen—but shall we just outline exactly how the Bill will work? If you are given a prognosis of six months by a doctor and you decide that you want to—

[The Chair]

Order. Again, can we stop using the second person?

[Dr Opher]

Sorry—will my hon. Friend not accept that this Bill will work in such a way that people may register for assisted dying, but only actually do it when their death is close? Therefore, if they get better and unexpectedly live longer, they will not take their lives.

--- Later in debate ---

[Naz Shah]

I am happy to withdraw that comment, given the welcome intervention of my hon. Friend the Member for Spen Valley. When intervening on me in a previous sitting of the Committee, she stressed that most of the assisted deaths of people with eating disorders took place in the Netherlands and Belgium. The survey that Ms Roff and her colleagues carried out did find that the Netherlands and Belgium had more assisted deaths of people with eating disorders than Oregon, but it also found that Oregon itself had more than one such case. California and Colorado have also accepted people with eating disorders as subjects for assisted death. I remind hon. Members that, as I noted earlier, Oregon has a considerably smaller population than England and Wales. In 2023, the last year for which we have full data, Oregon had a population of just 4.25 million. By contrast, England and Wales had a population of 60.85 million—more than 14 times higher.

Perhaps it is the case that Oregon has had two assisted deaths for anorexia sufferers, as one witness told the Committee. In England and Wales, we have 14 times the population of Oregon. If it became legal for sufferers of advanced-stage anorexia to take their lives by assisted dying, we would almost certainly have more cases than Oregon.

[Dr Opher]

Does my hon. Friend not believe that an eating disorder is reversible? Under the Bill’s provisions, if someone has a condition that can be reversed by treatment, they would not be appropriate for assisted dying. Is she saying that eating disorders are not reversible?

[Naz Shah]

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

[Naz Shah]

I concur with the hon. Member’s remarks.

[Dr Opher]

Actually, there is a lot of debate about whether terminal states of eating disorders actually exist or not, so they cannot be said to be a real thing in that way. Some people in the profession think they certainly do not exist, so I would contest the point made by the hon. Member for East Wiltshire.

[Naz Shah]

I thank my hon. Friend for his intervention, but the truth of the matter is we have 10 cases that have gone to the Court of Protection. In nine of those 10 cases, judges ruled that the young people—women and girls, one was only 19—did have the capacity not to take treatment.

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?

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

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

Simon Opher Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

Patients who are considering assisted dying have had terrible news. They have been told that they may well die within six months. They will be grieving, uncertain and very scared. These people deserve to know the full picture when they have their initial discussions, and these intelligent and constructive amendments would help to ensure that they had the full picture. I ask all members of the Committee to support them.

[Dr Simon Opher (Stroud) (Lab)]

I will briefly go through my impressions of the amendments. A lot of amendments in this group call to mind one of the difficulties that we are having in Committee, which is about the role of professional integrity against what we should be putting down in law. One problem is that, if we state something in law and a professional does not do it, then they are acting in an illegal way—and that introduces a different concept into a medical consultation. We must be very careful about introducing to a medical consultation a load of requirements in law, therefore reducing the freedom of that consultation whereby the doctor and patient can decide on what is best for the patient.

Amendment 342 is in the name of my hon. Friend the Member for Shipley. I reiterate that all the amendments have been tabled in good faith, and I absolutely respect them. The amendment would mean that the initial doctor—who is likely to be a GP—to whom the person comes and wants to speak to about assisted dying “must” conduct a preliminary discussion, rather than

“may (but is not required to)”.

The problem there is that some doctors will be conscientious objectors to assisted dying and we have to protect their integrity. We must not force them to do something that is against their will.

I note that amendment 341, which we will come to later, is about the obligation to give information to the patient if they ask for assisted dying. That is an appropriate amendment, but forcing a doctor who does not agree with assisted dying to discuss it is not fair on the medical practitioner. That is not what the Bill is about. In many other places, there is freedom for the medical doctor to avoid getting involved in discussions if they do not wish to. That is an incredibly important part of, and concept in, this Bill. Without that, I think the medical profession would not accept the Bill. That is very important.

Amendment 285 is about needing to consult a specialist in the relevant illness. I think we need to understand the process of what will happen under the Bill. Let us take an example of a patient under an oncologist—a cancer specialist. The oncologist will almost certainly say at some point during the consultation with the patient, “I think that there is no further treatment that is going to prolong your life, and you are likely to have six months or less to live.” That will be done by a specialist. I do not know general practitioners who would confidently predict a prognosis of six months or less; it would come from a specialist. Indeed, cancer care in this country, until the palliative phase, is generally run by specialists and hospitals. GPs are not generally involved, apart from to support the patient. However, if the oncologist feels that the patient has less than six months to live, they would probably come to see the doctor under this legislation, and the initial discussion will then take place. They will already have a steer as to the likely prognosis.

[Naz Shah (Bradford West) (Lab)]

I am trying to understand. My hon. Friend is saying that the oncologist is a specialist, but that they might not be the first doctor to have the first discussion; he said that they might not want to be a part of this process. I would like to understand that a bit more.

[Dr Opher]

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

[Danny Kruger]

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

[Dr Opher]

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

[Lewis Atkinson]

Does my hon. Friend agree that the provision of a further independent doctor assessment—both one and two—in addition to the doctor conducting the initial discussion, would provide a further safeguard for a diagnosis, if terminality could not be supported by other professionals?

[Dr Opher]

I absolutely agree. We are imagining that the doctors will all be independent and will not know anything about what other doctors have said, but there will be communication and access to medical records, and they will also tell the original doctor what their opinion is, and so on.

If we accept these amendments, we risk over-embroidering the Bill, which will make it almost impossible for doctors to say anything in a consultation. We must leave that free, because that is a central tenet of medical care, and if we put laws around it, there will be legal process over the medical consultation, and doctors will be frozen with fear about breaking the law. They are regulated by the GMC, and we are all terrified of referrals to the General Medical Council for that very reason: because we are trying to operate at the best standard that we can. I truly understand the amendments, but I do not think they will make the Bill any safer, and that is what we are all here for.

[Jake Richards (Rother Valley) (Lab)]

I am very sympathetic to the amendment and have thought long and hard about it. Can my hon. Friend explain to me, from his experience, but also from looking at the Bill and speaking to others, the effect of clause 4(4)(b)? As a non-clinician layperson, it appears to me that if a medical practitioner is discussing the likely effect of any treatment, then by its very nature that would lead to a discussion about prognosis, and the uncertainty and certainty around that.

[Dr Opher]

What my hon. Friend points out is absolutely true. The Bill’s drafting is simple but very effective. For prognosis, for example, it says that it is

“reasonably…expected within 6 months.”

As we have discussed many times in this Committee, prognosis is not exact; it is an estimate. It suggests that the patient has a terminal illness—that is to say, the illness will lead to their death. All we are arguing about is exactly when that will happen. It is reasonable to say, as doctors already do, “It is likely that you have six months to live.” That is not exact—as doctors, we cannot predict the future, even if people think we can. I totally accept that. However, we can make estimates as to what is likely to happen.

As my hon. Friend just mentioned, there are lots of really good news stories of people living longer than their prognosis. However, for the Bill to be effective, and to give relief to people who genuinely need it, we have to have a prognosis, based on medical evidence, of six months.

--- Later in debate ---

[Naz Shah]

From what I hear, my hon. Friend is supportive of the amendment. Does he agree that it just sets out what he says is best practice? I am trying to understand the objection to setting out good practice on the face of the Bill.

[Dr Opher]

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

[Danny Kruger]

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

[Dr Opher]

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

[The Chair]

Order. I did not intervene.

[Dr Opher]

Sorry, Mr Efford. I do not deny that the hon. Member makes a good point, but if we embroider this too much, the Bill will not be safe. That has been the case throughout. Any good medical care is based on giving treatment, availability and the likely effects of that, and on giving prognosis and the chance of the prognosis being longer or shorter. That is all based in good clinical care.

On amendment 343, the uncertainties of estimates of how long a person has to live are covered in clause 2(1)(b):

“the person’s death in consequence of that illness, disease or medical condition can reasonably be expected within 6 months.”

“Reasonably” is part of the Bill. It suggests that one cannot say that the estimate is exact. The Bill does not say that it is exact; it says that it is a reasonable estimate of that person’s life. I think that takes care of that amendment.

In amendment 344,

“the risks and benefits of such treatment, potential side effects, and the impact of the treatment”

are covered by

“any treatment available and the likely effect of it”

in clause 4(4)(b). My general point is that none of the amendments are actually wrong; they are just unnecessary. I would like to leave it at that.

[Lewis Atkinson]

I will be brief, as I am conscious that the Committee needs to make progress. I will speak briefly to amendment 275 in my name, which, as others have said, amends the current reference of “any available” to “all appropriate”. Listen—people at the end of their life deserve the best. They deserve to know about and have the option to access all appropriate care. In my experience of the NHS, that is exactly what clinical teams ensure patients get. But we need to guard against any suggestion that the information given should be somehow filtered around availability, which I know is not the intention of my hon. Friend the Member for Spen Valley.

In my experience, views on availability are often incorrect anyway, so ensuring that “all appropriate” options are offered in information is the best thing to do. If nothing else, it creates a level of societal pressure to ensure that all appropriate care is available, which I hope we can all support.

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

Simon Opher Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Danny Kruger]

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

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

[Dr Simon Opher (Stroud) (Lab)]

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

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

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

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

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

The hon. Gentleman makes a powerful argument about doctors being vilified in the press, but does he believe there is a risk that it may go further and present a genuine safety risk to those doctors?

[Dr Opher]

Exactly. That is what worries me. I acknowledge what the hon. Member for East Wiltshire said about pharmaceutical sponsorship, but I do not think that has anything to do with what we are talking about here. What we are talking about is specifying what doctors are doing as part of their daily job, for which they are trained. It would not be fair to publish those figures and put those doctors at risk.

[Naz Shah]

I appreciate what my hon. Friend is saying, because I have mixed views on this. I would like to understand what would be appropriate. My concern is that there will be a difference, because doctors normally have these set-ups for treatment options but, in this instance, the service is not a treatment, so to speak. I genuinely want to understand: in his eyes, what would a good service that provided scrutiny and accountability look like?

[Dr Opher]

There are examples. Appraising other doctors, for instance, is specified as a job that doctors are trained for, and it is paid at a set rate agreed with the Department of Health and Social Care. There are many instances where this occurs. I totally agree that the fee a doctor attracts for the service should be clearly specified and in the public domain, but I do not agree that a single doctor should be identified as having seen, say, 10 patients who have requested assisted death. I think that is unnecessary, will not lead to increased patient safety and will make it less safe for the medical practitioners too.

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

Simon Opher Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Rebecca Paul]

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

[Dr Simon Opher (Stroud) (Lab)]

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

[Rebecca Paul]

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

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

In November, the hon. Member for Stroud said,

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

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

--- Later in debate ---

[Daniel Francis]

Absolutely. This amendment, of course, is widely supported by Committee members for that very reason. As I was saying, we already use that assessment for organ donation, and Members supporting this amendment believe that should be the case for those that are seeking an assisted death.

I now move on to amendment 284, in the name of my hon. Friend the Member for York Central. This amendment would change clause 9(3). Currently, that subsection lays out, and I will quote the language of the Bill, that the assessing doctor,

“(b) may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a registered medical practitioner who is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council or who otherwise holds qualifications in or has experience of the assessment of capability;”

This amendment would change the word “may” to “must”. In other words, the assessing doctor would have a duty to refer the person being assessed to a consultant psychiatrist if they had any doubt about that person’s capacity. I argue that this is a change that we both should make, and can easily make. If a doctor has doubts about the capacity of an applicant, it is good practice for them to refer that person to a doctor or a specialist in that field.

[Dr Opher]

Could I ask which amendment the hon. Member is talking about? Is it 284 or 6? Amendment 284 says that psychiatric assessment is mandatory in all cases, whereas amendment 6 says it is mandatory if capacity is in doubt. I just wondered which one he was talking about, because I support one and I do not support the other.

[The Chair]

Dr Opher, maybe you want to catch up on the papers and then intervene when you have a question to ask.

[Jake Richards]

I will be brief. I will talk about my amendment 280, which I will not press to a vote. There remains an area that needs more exploring in this legislation—it has come up in debates already, but needs to be looked at further—namely, that a person may have capacity but have other mental health conditions that may impair their judgment. In those circumstances, a more thorough assessment than the two-doctor stage there is at the moment would be right. In reality, that is very likely to happen under the current structure of the Bill. My amendment simply attempts to make sure that it is mandatory. Having had discussions with my hon. Friend the Member for Spen Valley, I know that she is sympathetic to that.

There are amendments in the next group that aim to do the same thing. They, along with my amendment, may not be quite right. I urge the Government to look at this issue and see how we can work together to come to a conclusion, because I think that all members of the Committee would want that. I also support amendment 6, as I think everyone does.

[Dr Opher]

I apologise, Mrs Harris—I have got slightly confused with all the amendments. I do not have a speech that has been prepared for me, or anything like that, but I would like to make some comments. I think this is about the role of psychiatry and capacity, and how we deal that in the Bill. All these amendments reflect that. I would like to concentrate on whether we should actually mandate referral for all patients to a consultant psychiatrist, or adopt amendment 6, which suggests that if one of the two assessing doctors has concerns about either capacity or mental health, they should refer the patient to a psychiatrist. Those are the two choices I think we have here.

--- Later in debate ---

[Danny Kruger]

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

[Dr Opher]

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

[Kim Leadbeater]

My hon. Friend makes a powerful point. If we think about some of the people we have met—the families who have lost loved ones to terminal illness and the patients who are terminally ill—they are very clear in their decision. For me, it would be another barrier to those patients, who are dying people, to make them see a psychiatrist for every single case.

[Dr Opher]

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

[Danny Kruger]

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

[Dr Opher]

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

[Naz Shah]

rose—

[Dr Opher]

I apologise to my hon. Friend; I will continue for a little bit. We use secondary care and psychiatrists when we have a doubt about our decisions. If we have a doubt, then it is entirely appropriate to use psychiatrists in that instance, and we must do so. That is why I approve of amendment 6.

[Kit Malthouse]

As I understand it, I do not think if someone is donating an organ that they do actually have to see a psychiatrist; they have to see somebody who is an appropriately trained assessor from the Human Tissue Authority. To me, that sounds equivalent to the second doctor in our process—someone who is appropriately trained to assess patients and what they need to do. This talk of it having to be a qualified registered psychiatrist, compared with an organ donation, is incorrect.

[Dr Opher]

I completely agree with the right hon. Gentleman. By amending clause 12 to include social workers, who specialise in spotting coercion, there would be a psychological component in that panel. I emphasise that the first two doctors are trained in psychological assessment—they have to be to become a doctor, and we must respect their knowledge and decision making. Psychiatrists will be incredibly useful in difficult cases of capacity, but using them in every case would not be using them in the best capacity.

[Naz Shah]

My hon. Friend is being generous with his time. I do not question the capability of those doctors, but how does that square with the concerns of the Royal College of Psychiatrists that if a doctor has never met the person before, they cannot make an assessment on coercion? That might impact on capacity.

[Dr Opher]

Sorry, could you make that point again? I did not quite understand it.

[The Chair]

No, I am afraid not.

[Dr Opher]

Fair enough. Thank you, Mrs Harris. I was warned yesterday not to take interventions and I should have followed that advice.

[The Chair]

Dr Opher, I remind you yet again that “you” is me, and I have not asked you any questions. It is “my hon. Friend”.

[Dr Opher]

I am grateful that you have not intervened as well, Mrs Harris. You did say that I am allowed to call you “you”.

I will finish on this serious point. Amendment 6 has much power, and we would all agree that if the first or second doctor has doubts, they must—not may—refer to a psychiatrist. Expecting every patient who requests assisted death to have a psychological or psychiatric assessment is simply not necessary, and it would not improve the safety of this Bill.

[Stephen Kinnock]

rose—

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

Simon Opher Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Sarah Olney]

The hon. Member is exactly right. An assessment of whether somebody should qualify for assisted dying needs to be based on objective criteria. If those are not met, the only way that a second independent doctor should have a role is if either the circumstances have changed or, for whatever reason, the first doctor is unable to reach a conclusion. There must not be a situation in which the first doctor has made one decision and a second doctor arrives at a different decision, because that would imply a variability in the way the objective assessments are made. Not tightening this loophole would imply that we are prepared to allow such a variability across the medical profession, and I do not think we should allow that.

My final amendment in this group is amendment 460. I am concerned that the word “particular” in clause 10(3) negates the subsection’s purpose of ensuring that only one second opinion from the co-ordinating doctor can be sought, because a person could withdraw their first declaration, make a new one and start the process afresh; that declaration would then not be the “particular” first declaration. By removing “particular”, the loophole would be closed, and the safeguard would be made more effective. This concern was brought out well in Disability Labour’s written evidence:

“We are concerned that whilst 10(3) only allows for one second opinion to be sought, there appears to be nothing in the bill that stipulates a waiting period before a new application can be made. This risks applications being repeated until a supporting opinion can be obtained, thus negating the purpose of 10(3).”

I hope the Committee will accept my amendments.

[Dr Simon Opher (Stroud) (Lab)]

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

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

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

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

[Rebecca Paul (Reigate) (Con)]

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

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

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

[Dr Opher]

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

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

--- Later in debate ---

[Danny Kruger]

Will the hon. Gentleman give way?

[Dr Opher]

Actually no, I will not. I will go on, if that is okay.

Amendment 459 states that the second-opinion doctor “must produce a report” outlining their reasons for reaching a different opinion, but the whole nature of this is that the doctor is independent. As we have heard, if it is suggested that someone either is or is not allowed to get an assisted death, that might affect the assessment of the independent doctor. It would not be good medical practice to have that assessment in front of the independent doctor—that would lead to poor assessments. We need a right to a second opinion and we should have a truly independent doctor.

Amendment 460, which is the last in the group, would allow a patient only one declaration in any part of their lives, even if circumstances change. Although there will be vanishingly few instances where that would be relevant, I do not feel that such a provision would make the Bill any fairer or safer.

Amendment 143, tabled by my hon. Friend the Member for Broxtowe, would allow a second and a third opinion. It is my opinion, and the opinion of many of us, that we do not want doctor shopping. We want to allow one second opinion from an independent doctor, but not more than that.

[Juliet Campbell (Broxtowe) (Lab)]

Amendment 143 has been withdrawn.

[Dr Opher]

Has it? Okay. I thank my hon. Friend.

The amendments in this group all come from a good place, and I understand where hon. Members are coming from, but I do not feel that anything in them would make the Bill any safer or fairer for patients.

[Lewis Atkinson (Sunderland Central) (Lab)]

It is a pleasure to serve under your chairship, Sir Roger.

I rise to speak to a couple of the amendments. Amendment 348 is likely unnecessary. I would have been minded to support it had it referred to a registered GP, but the language of “usual or treating doctor” is unconvincing. I am not sure what those terms refer to. The registered GP absolutely should be informed, and both normal practice and the provisions in the Bill about entering information into medical records would mean that that is the case. For me, “usual doctor” is not the right terminology; it does not achieve what I think some of its proponents want. With reluctance, I will vote against that amendment because it does not refer to a registered general practitioner.

On amendments 303 and 458, I believe there must be provision for a second opinion. However, I am persuaded by the points made by the hon. Member for Richmond Park about amendment 459. I slightly disagree with my hon. Friend the Member for Stroud: although the independence of the second opinion is important on matters such as the terminal prognosis, when it comes to the detection of coercion, the more information, the better. It is one thing to be independent in a medical assessment, but the amendment speaks to a psychosocial assessment. We are trying to detect coercion, so it is important that every decision maker gets further information as the process progresses.

The provision for five different touchpoints of assessment is one of the strengths of the Bill. Each assessment should be done in a way that can be progressed with more information. It is not just five different independent points of information; because of the Bill’s record-keeping provisions, the assessment should become increasingly informed throughout the process. I certainly think that the panel, or whatever we get to, should have sight of any negative assessment from an independent doctor, as well as any positive one. The panel will then be able to do its job of scrutinising the two decisions, potentially weighing them up, and calling the different doctors who have given different decisions. I am, then, persuaded by amendment 459.

--- Later in debate ---

[Danny Kruger]

What the amendment clarifies is that the doctor does not have to look at any records at all unless he or she considers them relevant. It gives total discretion to the doctor to disregard huge swathes of the patient’s history. Yes, I do expect the doctor to review the entirety of a patient’s record—obviously, the record of a childhood broken leg can be skipped over quickly. What I do not want to do, as the Bill currently does, is allow the doctor to say, “Oh, I missed this evidence of a mental health condition” or “this indication of coercion from five or 10 years ago, because I didn’t consider that aspect of their records to be relevant.” It places a significant obligation on the doctor, but that is, I am afraid, what we are doing in the Bill. We are placing huge obligations on doctors and we should do it properly.

[Dr Opher]

As the amendment states, it is about examining medical records for things that are relevant. If we are talking about coercion or capacity, these sorts of items will be relevant. I do not know if Members have ever seen medical records. Some people have extremely large medical records, and we have summaries for that, but if a part of that summary indicated something that we were suspicious of, we would look into it. As my hon. Friend the Member for Sunderland Central has just said, the complexities of childhood tonsillitis do not really need to be examined in this case. We have to, and we always do, specify what we look into doctors.

[Danny Kruger]

As I have said in my many exchanges with the hon. Gentleman, I want to see the good practice that he claims—absolutely accurately, I am sure—to perform is applied across the system. He says that if doctors see in the summary some indication of concerns, they will look more closely into it. Well, I jolly well hope they would. The problem is that the summary might not be complete. I suppose the distillation of my point is that we should say, “Don’t rely on the summary. Proceed with a proper analysis. Take responsibility for making sure that you have reviewed the entirety of the patient’s record.”

We have to address throughout our consideration of the Bill the workload that we are placing on busy professionals. Nevertheless, if we consider that this matters—and it is a question about knock-on effects on the NHS, which we could discuss in due course—it is appropriate to expect proper time to be taken. A specialist with two hours and a full record in front of them might spot the misdiagnoses, question the prognosis, flag the depression and catch the abuse. If given half the time and a licence to skim the record, as the amendment would give them, they could very easily miss something, so I think the word “relevant” is a great gamble.

--- Later in debate ---

[Naz Shah]

I will try to keep my remarks brief. I first speak to amendment 468, tabled by the hon. Member for Reigate, on the asking of the question why someone wants to have an assisted death. When I originally came to this debate, Dermot, a humanist who was also my election agent—a lovely guy—came to me and said, “Now that this Bill is going through Parliament, will you support it”? I said, “Explain it to me.” He never once mentioned the word “autonomy”. If I remember correctly, what he talked about was suffering, pain and horrible deaths, which many hon. Members have referred to. We have heard lots of examples during this Bill Committee.

My hon. Friend the Member for Luton South and South Bedfordshire said that the decision was none of a doctor’s business and that the issue was about autonomy. However, if a woman was being coerced into an assisted death, the idea that it was none of the doctor’s business would not quite wash with me. We talk about autonomy, but if someone does not have autonomy in their lives—if they are in an abusive relationship, are a victim of coercion or have a vulnerability—they might not have the choice.

When we ask a question, it is often about something else. I have experienced this myself. I am very passionate; when I am talking about things, somebody might just stop me and say, “Naz—what’s this actually about?” That is all it takes to make me stop, take a step back and a breather, and think for a deeper minute about whether the issue could actually be about something else. We do not always stop to think.

[Dr Opher]

The amendment is good practice; I do not in any way deny that. The hon. Member for Reigate is obviously coming from a really good place. However, the amendment is almost like specifying that when someone goes to see a doctor, the doctor has to say, “How can I help? What is wrong?” It is just unnecessary; that is my only feeling about it. If someone came in and said, “I would like to request an assisted death”, the doctor would not just say, “Okay”—they would ask how the patient was feeling. It is normal medical practice to ask what is going on in someone’s mind, so that does not need to be specified in the Bill.

[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.

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

Simon Opher Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Danny Kruger]

All right. I regret my failure to assuage the anxieties of the hon. Member.

Let me explain why it was so important that we had a judicial stage. My complaints were never against the principle, but always against the practicalities, for the reasons I have just given and will go on to say more about. The value of a judicial stage is that it gave the doctors certainty and, indeed, protection for the process they were responsible for.

I want to cite the evidence from the Medical Defence Union, which provides doctors with insurance against claims of medical negligence. Responding to the suggestion that judicial involvement could be replaced by some other decision-making body, it stated:

“The MDU strongly rejects this assertion. The involvement of the judiciary is essential. Its absence leaves doctors unduly exposed. Media reports suggest that an alternative safeguard is being mooted. No ‘independent panel’, however so constituted, can replace the legal authority of a course of action sealed and ratified by a judge. Doctors deserve that certainty when relying upon this Bill to provide the very best for their patients at the most delicate moment of their duty of care.”

I will also cite the evidence that we received from Ruth Hughes, a senior barrister with 17 years of experience in mental capacity law. I cannot say that she is a King’s counsel because she does not become one until later this month—congratulations to her. She stated in her written evidence that

“if there is no judicial declaration because the judicial safeguard is not enacted, then there is a risk that the estates of persons who have been assisted to die will be sent into turmoil. This is due to the possibility of arguments being made that beneficiaries of the estate have ‘influenced’ the person into obtaining the assisted death.”

She said that

“even if there is no conviction but another person asserts there was ‘influence’…not undue influence”—

and certainly not coercion, which is banned by the Bill—

“but a lower standard of ‘influence’ by a beneficiary of the estate…then the personal representatives will be advised to obtain directions from the Court as to how to administer the estate.”

Her point is that, even if the bar for the assisted death is met, in terms of influence, coercion and so on, the testamentary or probate challenges that the estates will then go into are considerable.

The fact is that somebody has to be the judge—somebody has to take legal responsibility for the decision that is made. In the common law system, we do not give powers of life and death to panels; we give them to legally constituted bodies with judicial authority. To cite the MDU again:

“To put it plainly, without judicial involvement someone will have to take responsibility for the legality of the action.”

[Dr Simon Opher (Stroud) (Lab)]

Again, I thank the hon. Member for quoting all this, but does it mean that he supports the original clause 12?

[Danny Kruger]

I will be voting for clause 12 to stand part, because I think it is an essential safeguard, but it is not strong enough. There are all sorts of problems with it around capacity and the way it is constituted, and I will come on now to how I think it can be improved.

[Dr Opher]

indicated dissent.

[Danny Kruger]

The hon. Gentleman does not seem impressed by my straight answer to his straight question. Yes, I do support clause 12. I think we should strengthen it, in the ways that I will now explain. We do need a court, and I think Parliament was right to demand this, or to support it. We have a comparable model in the Court of Protection, which applies when there are disputed decisions about whether to withdraw life support. By the way, I mention to hon. Members who have referred to this—just to go back to an earlier debate—that, with the Court of Protection, one is obliged to notify the family. So even there, when there is a decision to withdraw life support, the family is notified, but we have decided not to notify the family under this Bill. But anyway, the Court of Protection does provide an appropriate comparison.

Whether we are talking about the Court of Protection or the High Court, either would work if the system was set up right. The crucial thing, in my view, is that it needs a proper adversarial arrangement so that the judge can actually judge. The way that judges work in this country, under the common law system, is that they hear arguments and then make decisions. It has been suggested that there could be a role for the official solicitor in acting “for the state”, as it were—or indeed “for society”, perhaps, or however we would want to put it—to perform the role of challenging the application and taking responsibility for presenting any alternative pieces of information that the judge should consider.

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

Simon Opher Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Stephen Kinnock]

The right hon. Member sets out clearly the difference between self-administration—the concept at the heart of the Bill—and the performance of the act either jointly or by the doctor. The latter is not permitted under the terms of the Bill; the former is. That is where we are.

[Dr Simon Opher (Stroud) (Lab)]

The lack of an ability to assist in the final process would put medical professionals in a very difficult position. Would carrying the medicine to the room where the patient is count as assistance? I think we have to have assistance in the Bill, but I also feel that, as the Minister has outlined clearly, someone can help a person to self-administer but cannot administer. That is quite clear to me.

[Stephen Kinnock]

I thank my hon. Friend, who speaks with considerable clinical expertise. It is about exactly that difference between self-administration and administration. If we cleave to those two principles, that is the basis on which we will achieve the stated aim of my hon. Friend the Member for Spen Valley.

--- Later in debate ---

[Dr Shastri-Hurst]

My hon. Friend hits the nail on the head, because it is the patient who is driving the decision. They are making that act by activating the electronic device—the computer or whatever it may be in terms of assistive technology—but they have the power and control over that decision-making process, which is completely distinct from a clinician doing that act. It is distinct because it is activated by the patient—by the person making that decision—and that is why I draw the distinction. My hon. Friend may not agree, but that is my rationale for drawing a distinction between the two.

[Dr Opher]

rose—

[Dr Shastri-Hurst]

I am being ambushed by the left.

[Dr Opher]

I agree with all the hon. Gentleman’s points. In terms of assistance, what we are talking about, potentially, if the technology arrives at that, is that the doctor may be able to put a Venflon into the patient’s vein, but they would not put the drug through the Venflon into the vein. That would enable the patient to have control. That is the type of assistance that could be quite useful in this scenario, but it would not involve the doctor actually delivering the drug.

[Dr Shastri-Hurst]

I am grateful for that helpful and thoughtful intervention.

For the reasons I have set out, I consider that the amendments create unnecessary and highly undesirable legal confusion, so I shall not support them.

--- Later in debate ---

[Danny Kruger]

I agree.

[Dr Opher]

Actually, if we did an autopsy on any person who has died, pulmonary oedema would almost certainly be found because that is what happens in death—the heart stops and the lungs fill with fluid. I would also like to correct the idea that there is neuromuscular paralysis with pentobarbital. There is no way that barbiturates act in that way. All they do is sedate and put the person to sleep, and death comes afterwards.

[Danny Kruger]

I was not suggesting that pentobarbital has a paralytic effect. Often in assisted dying, a paralytic is administered first as part of the cocktail of drugs. Subsequently, we discover that while the patient may have appeared entirely calm, sleeping peacefully, significant trauma may have been occurring beneath the surface.

I defer to the hon. Member’s knowledge, but my understanding from the scientific evidence I have read, and that medics have given to me, is that the extent to which people executed by lethal injection, by pentobarbital, have their lungs fill with fluid is peculiar—it is remarkable. They effectively drown beneath their peaceful exterior.

I intend to press amendment 464 to a vote, and I intend to support other amendments in this group. Although I support the aspiration of amendment 532 to make provision for what to do in the event of a procedure’s failure, I think it gives too much leeway to the Secretary of State, so I will oppose that amendment. I think the amendments that the hon. Member for York Central and I have tabled are preferable.

To make the obvious case for those amendments, and as I said in a previous debate, there are three choices in the event of failure. The first is to ignore the plain signs of distress, of things going wrong and of the patient suffering, which is clearly a failure of the doctor’s duty of care. The second is to expedite the death, which we have decided would be illegal under the Bill. Therefore, the only option is to revive the patient and escalate treatment, rather than actively or passively facilitate their death.

I hope Members will agree that, on the rare occasions when assisted suicide goes wrong, it is right that the patient is immediately revived and taken to hospital, or for the doctor to take whatever action is necessary. I am interested to understand why those amendments should not be supported.

--- Later in debate ---

[Sarah Olney]

I am grateful for the hon. Gentleman’s professional experience, which is extremely helpful. He is absolutely right. Following the point made by the hon. Member for Banbury, we cannot define the circumstances in which a patient will find themselves when this is taking place. That is why it is incumbent on us to make sure we provide very clear guidance on precisely what Parliament intends.

As Dr Rebecca Jones told us in written evidence:

“As the death may take many hours, I’m uncertain of the practicalities of”

doctors remaining with the patient

“for many doctors…have competing demands on their time.”

In written evidence, Dr Chris Ainsworth asked how this will work in cases where death takes several days, as has happened in Oregon, while Dr Trevor Stammers wrote:

“If the doctor is required to be present until the patient’s death, this may require hours of practitioners’ time to fulfil and is unlikely to be adhered to in many cases if the dying process is protracted.”

Dr Rachel Fisher said in her written evidence that for Australian doctors, who are not required to be present at the final act, each assisted death requires around 60 hours of professional time. For British doctors, we will need to add the time it takes for the self-administration to result in death. Dr Fisher also raised the real impact on doctors, writing,

“imagine the practicalities of those who must deliver it. The GP, motivated by a deep desire to preserve life and relieve suffering arrives at the home of the patient with a cocktail of powerful drugs. What if the patient has symptoms? Who will collect their child from nursery or school if the patient takes a long time to die? How will they know when to decide the death was unsuccessful? Will there be counselling for GPs observing and feeling complicit in a potentially drawn out and symptomatic death?”

Finally, Dr Paul Shaw asked in his written evidence:

“How will this service be funded? What support will be required from the NHS when things go wrong or death takes longer than expected? Will this be a 0900-1700hrs service? What will be the out of hours arrangements?”

A lot of the written evidence touches on the practicalities of a doctor being required to remain with the patient until they die. Amendment 429, in the name of the hon. Member for Bexleyheath and Crayford, seeks to clarify whether “being with the patient” requires the doctor to be physically present in the room.

[Dr Opher]

I understand that hon. Members are coming from a good place, but I do not understand how amendment 429 would stop the doctor having to stay with the patient until they die. I agree that it is an important issue, so could the hon. Lady elucidate on that?

[Sarah Olney]

The hon. Gentleman gives me an opportunity to conclude my remarks. I support amendment 429 because it is important to provide clarity that when we say “with the patient,” we mean in the room. However, I invite the Minister to expand further on the resource requirement of assisted dying. I want the doctor to remain with the patient, which I think is critical. That is why I support amendment 429, but the implication of the Bill is a considerable resource requirement, particularly for GPs, and I would like the Minister to respond to that.

--- Later in debate ---

If England and Wales are to have assisted dying, it should not be conducted as it is in other jurisdictions. The states that currently have it gather patchy and incomplete evidence on the complications that people suffer. Let me repeat that those complications include pain, vomiting and lengthy deaths. We want to avoid people suffering those, and one way that we can do that is to gather data on how often it occurs. The amendment would do exactly that, and I hope all members of the Committee can support it.

[Dr Opher]

I am glad to serve under your chairmanship, Sir Roger. First, I will briefly address the whole area that we are talking about. GPs who are involved in terminal care will go and see a patient as they are slowly dying; we do not know at any point what will happen, and almost anything can happen. I have sat with people who may at any point have a massive pulmonary haemorrhage and drown, for example, or they may just quietly go to sleep—or they may start vomiting.

What those of us in terminal care do is react to what is happening with the patient. For example, if they start to be sick, we would give them an anti-emetic; if they start to become very agitated we would then give them midazolam. What I am saying is that this is normal medical care. We have to be very careful not to stipulate in the Bill what is actually normal medical care.

I understand that what we are proposing is a new option that has not been there before, and we know that there are complications. But in a terminal situation, there would be no occurrence where we would call an emergency ambulance and take them to hospital, for example.

[Sean Woodcock]

My hon. Friend speaks with a lot of knowledge, and every time he contributes I learn something about the medical profession. My challenge to him is that while he is right that at the end of someone’s life GPs and doctors are used to looking after somebody, and there are lots of different complications from medical treatment, in the situation we are talking about the treatment—if we can call it that—is to end their life. That is a distinct difference. Something has gone wrong if their life has not ended suddenly or peacefully, as they were hoping. That means that they might die hours or days later, potentially in agony, or they will linger on, potentially also in agony. The amendment is to try and clarify what then happens, because I would suggest that this is very different from a normal medical procedure.

[Dr Opher]

I thank my hon. Friend for his sensitive and clear worry. But it is important to note that we would not in any circumstances try to do something that would finish someone’s life after they had been given their self-take medicine, because that is against the law. In the Bill we have made a clear distinction between the doctor—a euthanasian, if you like—taking the life, and the patient taking medicine that finishes life. What we need to do is simply support the patient. If, as my hon. Friend suggests, they are in pain we would give them a morphine drip, which is in common use in terminal care. I absolutely respect what he says, but the same treatment principles would be in place as in terminal care.

[Danny Kruger]

Even in terminal care, when it is understood that a patient is close to death, doctors would surely not overlook a patient for whom an assisted death is clearly failing. The hon. Gentleman suggests that it would be inappropriate to—and that he would never—call an ambulance, or send a patient to A&E; I wonder whether he also means that he would never seek to revive a patient or bring them back to life, as it were, if they were experiencing complications. To his often-repeated suggestion that there is no difference between this and normal medical treatment, there is an enormous difference. Doctors administer lethal drugs to a patient, and are then also supposed to be somehow caring for the patient in the traditional way that doctors should. These things are inherently incompatible, and there is a choice between the two : is the doctor helping the patient to die, or is he helping them to live? That questions remains, and does he not acknowledge that there will be circumstances where it would be appropriate to revive the patient, and seek to support them as if they were living?

[Dr Opher]

I almost agreed with the hon. Gentleman earlier, when he asked at one point, should we not just leave this to doctors?

One of the key things the hon. Gentleman said is that the doctor administers the drug. This is self-administered, first of all, so that is a very clear line. However, also, in a case of terminal care—this is what I am trying to get across to the Committee—we know the patient is dying, and therefore if they are becoming worse we simply do things to make them comfortable, and we do not try to revive them, because they are dying. It is important that we realise that this is a very different medical situation from normal care, and that it actually needs very different skills as a doctor. Here, a doctor is not trying to prolong life, but trying to make a death as comfortable as possible.

That is why I support the Bill—because I think it will enhance a comfortable death. I wanted to make it clear that that is normal practice now in terminal care: we do not revive a patient with a terminal diagnosis who is in terminal care, but we make them comfortable.

[Sojan Joseph]

This is a very good discussion, and with a clinician as well—maybe my hon. Friend can help here. Are we leaving the Bill to professionals to administer, who might be confused and not clear about what they should be doing? In normal current practice, when somebody has a poor prognosis and is very fragile; we use “do not resuscitate” or “do not attempt CPR” decisions. Why do we not build that into the Bill—that everyone who is going through this process should have a DNR or DNACPR in place?

[Dr Opher]

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

[Rebecca Paul]

rose—

[Dr Opher]

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

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

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

[Daniel Francis]

I hear what my hon. Friend says, but the wording of clause 18(9) and (10) is ambiguous. Subsection (9) says that the co-ordinating doctor must remain with the person until “the person has died”, but subsection (10) says that the doctor

“need not be in the same room”.

I do not want to get into measuring metres, but where exactly is that place? Is it in the same room or is it in the same building? If it is in the same building, you cannot possibly be with the person until they die. Does my hon. Friend have comments on that?

[Dr Opher]

I am interested to hear what the Government say about the wording around that amendment and whether it is safe. I would defer to the Minister on that.

Amendment 430 from my hon. Friend the Member for Bexleyheath and Crayford, about a code of practice that must address complications and failures, is quite a strong amendment and I am willing to support it. If as doctors we have a code of practice about how we handle this type of thing, the amendment would potentially help, and perhaps answer some of the questions from my hon. Friend the Member for Banbury.

I do not believe that amendment 255 from my hon. Friend the Member for Filton and Bradley Stoke is necessary. I believe it should be dealt with under clause 21.

I believe that the very well put amendments 532 and 533 from my hon. Friend the Member for Ipswich could be covered by amendment 430.

[Naz Shah]

Will the hon. Member give way?

[Dr Opher]

Yes. I am sorry; I was going to give way to the hon. Member for Reigate at some point too.

[Naz Shah]

Many doctors have written in to us because they are confused by the Bill. Just as the hon. Gentleman is making his case here, there are many doctors who are writing in to us. I wondered what his response to that was, especially because he is a doctor.

[Dr Opher]

I am in two minds about the doctor being present until the patient dies. In the circumstances, we need to encourage this to happen at home predominantly, because I think that is where most people would prefer to do this action. We perhaps need to look further at whether the doctor needs to stay, in the rare situation where the patient goes on.

Let me conclude by saying that I know that the amendments all come from a good place, and that this is an anxious time, but terminal care is an anxious time for doctors, for patients, for everyone, because we do not know exactly what is going to happen. The Bill allows someone a way of dying, when they have a terminal illness, that has a bit more exactitude than normal practice.

[Jack Abbott]

I fully understand and am very sympathetic to my hon. Friend’s point about the family having privacy and space in the last moments. However—this is a genuine question—what happens if things start to go wrong? Although it is uncommon, we know it is possible. Do we expect the family members who are going through the last traumatic moments to have to go out of the room to find the doctor, albeit they might just be behind the door? I do not know that that would necessarily make it less traumatic, and for some people it could make it worse if the doctor is not there and present next to their bed.

[Dr Opher]

I think there is some truth in that, to be fair, but I believe we should leave it open to the family’s discretion, with the proviso that the doctor should be close at hand, whether that means outside the door or whatever. We need Government advice on whether amendment 429 is safe. I have nothing further to say.

[Lewis Atkinson (Sunderland Central) (Lab)]

It is a pleasure to serve under your chairship, Sir Roger. I will cover a few of the amendments, and follow on from my hon. Friend the Member for Stroud, whose points I broadly agree with.

When it comes to the location and, actually, a lot of the elements, I fear we are trying to over-specify practical matters. As in so many cases, this is not about capacity, coercion, assessment and so on; it is about the practicalities of death, and it is right that we allow the healthcare team for dying people and their families to operate with the professional skill with which they currently operate.

On amendment 429, on the doctor being in the same room, I can think of many instances in healthcare in which a healthcare professional is in an adjoining room, potentially even with a door open so there is a line of sight, and that is entirely appropriate. I think of observations, for example, in various settings. That provision is absolutely necessary and allows an appropriateness of proximity without intrusion. I am sure the doctor will be in the room at the point at which the substance is taken, but if someone then goes into unconsciousness fairly quickly, as would happen in the vast majority of cases, and then takes half an hour or so to die, it is entirely unnecessary for a doctor to be standing there in the same room, towering over the family, when they could be near at hand. I just do not think we need to specify that in the Bill.

I have some sympathy with amendments 532 and 533, tabled by my hon. Friend the Member for Ipswich, on the Secretary of State setting out regulations, but I fear the hon. Member for East Wiltshire did an excellent job of persuading me that they should not be accepted, because when a “must” is included in that way, we get into saying, “The Secretary of State must tell a doctor exactly what they must do in every situation.” The legal parameters are clearly set out in the Bill as drafted. There is no administration by a doctor on a person’s behalf; it must all be self-done. Additionally, we have not yet mentioned the existing provisions in clause 9(2)(c), which requires, at the point of assessment, a conversation between the assessing doctor and the patient about their wishes in the event of complications or any sort of delay.

--- Later in debate ---

[Naz Shah]

I absolutely agree and share those concerns. This is important. I appreciate that we have had this debate for many days now. Is this a healthcare intervention? Is it a treatment? What words should we apply? In this instance, when it comes to drugs, there are potential side effects. We have seen that they do not work everywhere and that they create complications. We have just debated whether a doctor should be in the room, outside the room or round the corner, as well as whether they should be visible or able to see what is going on. Ultimately, this is about the drugs. Having looked at the issue, I genuinely cannot imagine anything but the MHRA in this role. Are we really going to set up something completely new, outside our health service, that regulates drugs, their side effects and the potential implications?

[Dr Opher]

The matter of unlicensed drugs sounds very alarming, but we cannot regulate a drug through the MHRA if it unlicensed, and we would be looking for therapeutic effect, which would not apply in this case. More importantly, many other regulatory bodies, like the pharmacy framework and the General Pharmaceutical Council—

[The Chair]

Order. Remember that an intervention should be a sketch, not an oil painting. It should be a question or should seek clarification; it should not be a mini-speech.

[Dr Opher]

Does my hon. Friend accept that there are ways of regulating drugs other than through the MHRA?

[Naz Shah]

My hon. Friend clearly speaks with expertise. There are other regulators, but the reason why I support amendment 465 is that the MHRA is an institution that we trust and that has the expertise. My understanding—my hon. Friend might be able to tell me differently—is that, of the regulators, the MHRA is the body that does the ultimate rubber-stamping and gives our country confidence in the national health service.