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

Jack Abbott Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

I very much feel that our duty is to produce a workable and legally watertight piece of legislation. I have some concerns that I want to put on record. We must not prevaricate, procrastinate and keep on discussing indefinitely something that has been discussed for decades prior to its arrival here, but we need the confidence of the public that we have taken balanced views and have allocated sufficient time for witnesses. I put it on record that I am concerned there may be a public perception that the time we have over three days next week, although there is an extension to that time, is insufficient. If we need to return to this and if there is agreement that we need further witnesses, we need—somehow, within the circumscription of private Members’ Bills—the means to revisit that decision.

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

I want to briefly address the implication or inference that my hon. Friend the Member for Spen Valley, who is leading the Bill, has not produced an incredibly balanced set of witnesses, or indeed a scrutiny Committee. I put it on record that in principle I am in support of assisted dying, but I did not feel that I could support the Bill on Second Reading, as I had a number of concerns including the strength of the Bill. We will be listening to evidence and discussing the issue not on the basis of principle, but on the basis of the strength of the Bill, the deliverability of the Bill and the number of safeguards, among other things. We are not here to debate the principle—that is a really important point.

Points that have been made about the suitability or otherwise of the people coming to speak to us. It is wrong to imply that any of those individuals will use their personal feelings or principles and discount their neutrality. Are we really saying that the British Medical Association, the judges who have been mentioned or the chief medical officer will put their own views in place of their expertise and knowledge?

I should say for the public’s benefit, my hon. Friend the Member for Spen Valley ensured that all Committee members were able to submit hundreds of names for consideration. In my view, she has come up with a panel of witnesses who are incredible experts in their field and have long-standing expertise in these areas, and we should absolutely listen to them.

I am sympathetic to the right hon. Member for Dwyfor Meirionnydd, who said that we may need extended time to hear from more people. I know that my hon. Friend the Member for Spen Valley would certainly be sympathetic to that and that we can look to do so, if it is necessary. However, the perfect cannot be the enemy of the good. We have to ensure that we move this Committee along at a decent pace and hear from all these people.

Our job is to scrutinise the suitability of the Bill, not the principles. On that basis I oppose the amendment, although I am not against some of the names that have been proposed. Maybe there will be an opportunity to hear from them in future, but I do not think that we can get into a situation where we are removing some names and adding others. We would be here all week if we did, so I will be opposing the amendment.

[The Chair]

I now call the promoter of the Bill. I will then call the mover of the amendment.

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

Jack Abbott Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[The Chair]

I am very mindful of the time, as it is now three minutes past 10. This will be the last question of the session.

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

Q Thank you, Professor Whitty and Duncan, for being with us this morning. Professor Whitty, in October you and a number of chief medical officers published an advice note to doctors about a range of guidance on this issue. In it, you said that a couple of things are “unanimous” for medical professionals. I am focusing on the line where it says that

“we must not undermine the provision of good end-of-life care for all including the outstanding work done by palliative care clinicians”.

Do we take it, by implication, that you are fearful that this Bill could undermine good end-of-life care? In your view, how might we mitigate some of those risks in the Bill?

Professor Whitty: I will give a view and then Duncan will be able, as chief nurse, to mention the parallel bit of advice that said similar things. I think all medical, nursing and health professionals very strongly believe that palliative care and pain alleviation, which is not the same as palliative care but overlaps with it, and end-of-life care, which is also not the same but overlaps with it, are essential, and in some areas are not to the high standard that we would hope for. That would be a common view across the medical profession.

My own view and hope is that the Bill should not make the situation either better or worse. It changes one particular aspect in a very important way, but it seems to me that on the principle that we should be improving end-of-life discussions, which is where end-of-life care starts from, as well as supporting further the alleviation of symptoms and the provision of palliative care, there would be no disagreement from anybody in the medical or nursing professions, any other professions or the general public. That must be fundamental to how the Bill is thought about—

[The Chair]

Order. That brings us to the end of our allocated time with these witnesses.

Professor Whitty: Duncan, do you want to say if you agree or disagree?

--- Later in debate ---

[Dr Shastri-Hurst]

Q Has the GMC undertaken a legal assessment of the openness to legal challenge around that Montgomery point—if those conversations were not initiated and patients say that they were not given all the options available to them?

Mark Swindells: We have not done a forensic legal assessment of that nature, but obviously Montgomery is in case law, and Parliament has the power to set primary law. I listened to what the chief medical officer said and what Dr Green says about how restrictive or otherwise that might be in terms of the doctor’s role with the patient.

[Jack Abbott]

Q This might sound like playing devil’s advocate, and I fully appreciate that you do not want to reduce this to a tick-box exercise, as you described it. Some might argue that the risk of what you describe is that it creates a lottery, because you would be relying on doctors to use their personal judgment as to when to have that conversation. For example, if a patient and doctor do not have a particularly close or long-standing relationship, the doctor may not know what the signs are, so the patient, who may need to have that conversation, may never have it. The risk is that you would be reliant on good relationships forming over time and doctors using their intuition, so that some patients will have the conversations they need but others will not.

Dr Green: Obviously, it would be great if we worked in a system where doctors had all the time they needed to deal with their patients. I believe that the Bill mentions a duty to provide information from the chief medical officer, and having read the Bill, to me it seems very much like this might be in the form of a website or leaflet. We believe that it is important that patients should be able to access personalised information, and we would like to see an official information service that patients could go to, either as a self-referral or as a recommendation from their GPs or other doctors. That would give them information not just about assisted dying, but about all the other things that bother people at this stage of their life, and it would mention social services support and palliative care. It could be like a navigation service as much as an information service. That might address some of your concerns.

[Sean Woodcock (Banbury) (Lab)]

Q The issue of coercion came up with our previous witnesses, and they were talking about GPs, doctors and nurses being able to spot it because of their level of training, experience and so on. How frequently does coercion, or lesser versions of it, such as familial pressure and societal pressure, come up in the day-to-day life of a medical practitioner? Is it like the asbestos awareness training that I had in a previous job—something I had to have because I might very rarely bump into asbestos—or is it a tick-box exercise?

Dr Green: You are right: all medical staff have safeguarding training, and of course patients make important decisions often with the influence and help of their family members. Usually this influence is helpful, and it almost always comes from a position of love. The point at which such influence becomes coercion is difficult to find out, but my experience is that it is rare. I would recommend that you look at what has happened in other parts of the world that have more experience with this, because they have it as part of their training modules. Certainly, we would expect capacity and coercion training to be part of the specialised training that doctors who opt in would receive. I anticipate that the general safeguarding training should be sufficient for other doctors, who would obviously only be involved at that very early stage.

--- Later in debate ---

[Dr Tidball]

Q But you believe that your members would be able to pick up on and identify issues such as coercion?

Professor Ranger: I do. They are professionals, and I believe they would be able to.

[Jack Abbott]

Q My question, which relates to some of the points made earlier, is for Glyn Berry. Your organisation has recommended a new role: the approved palliative care professional. To go into the detail a bit more, you make a number of recommendations on what that role would include, such as ensuring that the person has the mental capacity to make the decision. First, are you therefore saying that this new role should sit alongside the two-doctor process, which has already been outlined in terms of final decision making? If the approved palliative care professional felt, for example, that this person did not have mental capacity, should they be able to, as it were, stop the process?

Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.

Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.

In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.

Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.

It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.

One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.

[Kim Leadbeater]

Q Thank you for coming and giving evidence today, and for meeting with me recently. You both represent organisations that have neutral positions on assisted dying. I am really interested in this multidisciplinary approach that you are talking about, and I think it is a really valuable conversation, so thank you for raising those points.

I want to ask a bit more about what this end-of-life conversation looks like in your experience, because you are absolutely right; of all the people who are spending time with patients in their last few months of life, it is often nurses and palliative care social workers. You have a really important role to play.

I am also interested in what this would look like in reality. There has been talk of a kind of separation of palliative care and assisted dying, but, actually, I think we should be looking to embrace a holistic approach to end-of-life conversations and end-of-life care, which is what has happened in other jurisdictions. You might have a patient who has signed up for assisted dying but never does it because they have good palliative care and they work with their palliative care experts and specialists. Therefore, I think it is important that we do not try to separate these things.

I would like your views on that, but I think that one of the strengths is that having these conversations about death, about dying and about end of life is a really positive thing. Your members have an important role to play in that, so could you talk a little bit about the holistic approach that your members take?

Professor Ranger: You are right regarding the conversations and the care around dying. Having those conversations with people around pain management and symptom management is particularly the role of palliative care nurses. With assisted dying, I think the conversation is sometimes slightly different. It is talking more as a nurse in some ways, because the primary reason that assisted dying is often a discussion is a lack of autonomy, not pain. Therefore, the conversation generally tends to go in a slightly different way.

Symptom control, and being scared of pain, is understandable, and we absolutely have the ability to get that right for people, but when it comes to seeking assisted dying, the primary reason is usually autonomy, rather than pain and fear of dying. Therefore, in a practical way, I think an experienced nurse or doctor will start to gauge the difference in those conversations, because they are different. I think it is about being really clear around those conversations and really listening to what people have to say, and then having a way to be able to ensure that what an individual wants is something that you have got, and that you listen to.

I absolutely agree with Glyn about safeguards and all the things that we absolutely need to make sure are there, but the whole point of assisted dying is not to be paternalistic, but to respect autonomy. Whatever safeguards we put in with that, we have to be really careful not to ignore that right of autonomy, which is primarily what this Bill is trying to preserve.

I think it is about being really vigilant and listening. A primary role of a nurse is not to advocate their personal view, but to really listen to somebody else and to ensure that what they want is pursued. In all that discussion, it is really important that that does not get lost.

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

Jack Abbott Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

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

Q I have a question for Dr Clarke and Dr Cox about the registration of deaths, which is dealt with in clause 29. Do you feel that the provisions set out in the clause are sufficient? If not, what further bolstering would provide the oversight needed to ensure that the processes and procedures are followed correctly?

Dr Cox: My understanding of the plan is that in the Bill—forgive me, but I am sketchy on this—the aim is for the registration to be as a natural death. It would not be referred to the coroner, and “assisted dying” would appear on the death certificate.

I am also a medical examiner. My concern is that, as a medical examiner, I am obliged by law to scrutinise all deaths to ensure that a referral to the coroner is not required and to identify any learnings. What concerns me in that role is whether enough recording is happening around decision making and the process to do my job properly. With my medical examiner hat on, do I know what happened? I do not see anything written down in the Bill about the records that are to be kept. What happened when the patient took the substance? What happened afterwards? Were any actions taken in the meantime? That is not so much something I have thought about a lot with my palliative care consultant hat on, but as a medical examiner it concerns me.

Dr Clarke: For the sake of time, I do not have anything to add. I completely agree with that.

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

Q Dr Cox, may I follow up on one of the things you said earlier? Forgive me if I have misunderstood; I want to be clear. Earlier, I think you said that in the countries that do not have assisted dying, the state of palliative care has improved more quickly than in countries that do. Is that a fair representation of what you said?

Dr Cox: In European countries and American states.

[Jack Abbott]

Q The whole panel has painted—and we have heard this previously—a pretty bleak picture of the state of palliative care in the UK. Would you say that it was better or worse than it was, say, 10 years ago?

Dr Cox: I suppose it depends who you are. If you live in one of the postcodes where you cannot get palliative care, if you are socially deprived, if you are a member of an ethnic minority or if you have a lung cancer diagnosis, you will not get very good palliative care in this country. I think that is awful.

[Jack Abbott]

Q I guess what I am driving towards is that simply not having assisted dying is not necessarily causation for improvement in palliative care. In this country, for example, we have not seen palliative care improve from where it was 10 years ago, the last time this debate came to Parliament.

Dr Cox: The position we would ask you to consider is whether this is the right time to bring in a law to give people a choice of assisted dying, when they do not have the choice to have good palliative care.

[Jack Abbott]

Q Sure. That is a really fair argument. Again, what I am driving towards is the point you were trying to make earlier, which is—I think this is fair to say—that countries that do not implement assisted dying improve their palliative care system. Clearly, that did not happen in the UK, so my guess is that that is not direct causation, is it? There are a number of other factors, although I agree that—

Dr Cox: The NHS is very different from any other jurisdiction—

[Jack Abbott]

Yes, so the direct comparison is not necessarily relevant. Is that correct?

[The Chair]

Order. Can you address the Chair? This is not a dialogue.

[Jack Abbott]

Sorry. I was trying to make a point—

[The Chair]

I understand that, but address it through the Chair.

Dr Cox: Palliative care may well have improved in this country over those years when it also improved in other countries where assisted dying was not available. What we are saying is that there has been chronic underfunding of palliative care, so where we are now is inadequate.

--- Later in debate ---

[Sojan Joseph (Ashford) (Lab)]

Q Alex, thanks for the written evidence and your experience in capacity assessment. We heard from the previous panel, especially from the practising Dr Clarke, how complex it is. She was explaining how she does not think everyone has enough training in capacity assessment, and it is so complex in NHS healthcare areas. You made an observation about multidisciplinary involvement, rather than just two doctors. Do you think having more than two people involved in the decision making can strengthen the Bill?

Alex Ruck Keene: I think for many reasons it can. On the pure capacity side, this is, at one level, an existential question. This is not a healthcare decision but an existential decision. The more people we have who are able to bring their different perspectives—the social work perspective on the person’s social circumstances or the medical perspective on their medical condition—the better, so that we have as many eyes on the person and insights into the person as possible.

It is about trying to make sure that the decision goes back to whether we are really satisfied that the criteria set out at the beginning of the Bill are met. I personally think we should have MDTs, for instance, as you would have in a Mental Health Act detention, so that we have more than one pair of eyes on it from more than one discipline.

[Jack Abbott]

Q Sir Nicholas, I am going to paraphrase a little bit, but you said people with Parkinson’s will never get a terminal diagnosis, so this Bill is no use to you at all—I think you used stronger language than that when you made your original statement.

Sir Nicholas Mostyn: I was sort of taken by surprise when she asked the me the question in the pub, and I would not have phrased it like that in court 50.

[Jack Abbott]

Q Sure. Let us phrase it in a different way today. Would you be able to expand on your thinking there?

Sir Nicholas Mostyn: Parkinson’s is such a complex condition. The medically qualified amongst you will know this—there are so many symptoms, and with the rate of development and the direction of travel, it is an enormously complex condition to know. That is why it is commonly accepted that you do not die from Parkinson’s, you die with Parkinson’s, and it is almost impossible to give a mortality rate as to when that is likely to happen—almost impossible.

When I was doing my research, I was slightly surprised to see that last year 6,000 death certificates had Parkinson’s written on them. They do say that the experts in Parkinson’s are the people with it, but the people you talk to are quite clear that it is impossible to predict and it is a really complex thing. That is why this arbitrary—I use the word technically—six-month period is a problem. If a doctor opines conscientiously and honestly, unless the Parkinson’s patient has already developed pneumonia, sepsis or something of that nature, or complications from falls—the common reasons for death—you will never get that six-month ticket. That is the thing; that is the problem.

[Jack Abbott]

Q In your view—I think you kind of said it before, and I would hate to put words in your mouth—are you saying that Parkinson’s sufferers and other similar—

Sir Nicholas Mostyn: Neurodegenerative.

[Jack Abbott]

Yes, those with such conditions. Are they left out of this debate?

Sir Nicholas Mostyn: They are.

[Jack Abbott]

Q In your view, and that of the rest of the panel, is there a way to legislate to include them?

Sir Nicholas Mostyn: It has been suggested that I want to expand the definition of terminal illness. I do not want to expand it. I want to redefine it so that it is more appropriately focused, in my opinion, on what this Bill should be about, which is the relief of suffering. That is what I believe the Bill should be about. You should get the permission to have an assisted death if you are suffering intolerably within five months of death or seven months of death—there should not be this arbitrary line.

Moreover, it should not be open to people who are not suffering, but who happen to have a six-month life expectancy. There are probably quite a few of them, for one reason or another, whose life expectancy is short, but their pain is well-managed. I do not believe that assisted dying should necessarily be available for them. I do believe very strongly—this is not an expansion, but in my view, a more appropriate focused redefinition of terminal illness—that it should be, as in Spain and in Holland, focused on suffering.

[Rebecca Paul]

Q My questions are to Alex Ruck Keene. Thank you for your written evidence, which I read with great interest. I have two questions for you. This follows on nicely from the discussion we have just had. Is there any risk that if the terminal illness definition were to remain in the Bill, it could be challenged under the European convention on human rights?

My second question, which is completely different—just to mix it up—is on a really interesting point in your written statement about how we need to give consideration to the national suicide prevention strategy. I found that really interesting, because the Bill potentially turns on its head the way we view suicide, and obviously we have been sending a certain message out there, particularly to our young people. Could you elaborate on the point you were making in your written evidence to the Committee?

Alex Ruck Keene: Gosh—yes. There is absolutely no way that you can stop people trying to challenge whatever Act is passed; there is no way you can stop people seeking to challenge that under the ECHR. We then get into this enormous argument about whether it is inevitably discriminatory. Courts to date have been very clear: “We are not going to get into this; it is for Parliament to decide whether to make assisted dying legal.” Once it is made legal for some people, but not for others, there is a difference in treatment. Whether it is discriminatory, and therefore contrary to articles 8 and 14 of the EHCR, depends on whether that difference is justified.

I am trying to be very careful in my language, because I try to do that. The Bill Committee and Parliament need to be very clear how, if you are going to limit this to a cohort of people—I feel acutely conscious that I am sitting next to somebody who would be excluded—it could be explained to somebody that they are not eligible and that there is a difference in treatment but it is perfectly justified. If you cannot do that, it will be discrimination.

The courts have been very clear that you do not have to have a system, but if you are going to have one—for example for social security benefits—then you need to have one that is non-discriminatory. That is the answer I can give to that. The one thing I can say is that you cannot stop lawyers trying to challenge. That is what they will do.

Sir Nicholas Mostyn: All laws discriminate; 69 mph is not an offence but 71 mph is. All laws discriminate. The question is whether it is justifiable.

Sir Max Hill: It is also a question of providing legal certainty, which is why the definitions in the Bill are so important. Provided that it is articulated clearly and within what the European Court so often calls the margin of appreciation, which it gives to sovereign states, then although I agree with Alex that a challenge may be possible, I cannot see a successful challenge to the Bill if it is drawn with the sorts of provisions we have here. Indeed, we have not seen local nation state examples of this sort being struck down by the European Court elsewhere in Europe, so I think it is very unlikely that we would see such a strike-down here.

Alex Ruck Keene: I really hate to get into it with such eminent lawyers, but there has not been a case in Strasbourg seeking to say that a limited class of case is discriminatory, so we just do not know.

Sir Nicholas Mostyn: I agree with that. I have changed my mind twice about this subject.

Alex Ruck Keene: Do you mind if I quickly touch on something else?

--- Later in debate ---

[Jack Abbott]

Q I will keep my question quite short. Is there anything about the law in either of your jurisdictions where you think there could be improvement, and that we can learn from in drafting our legislation here?

Dr Kaan: The thing I have been reading about that is concerning to me is the court approval that you seem to have written into your law. I heard your discussion this morning about how that might be done and whether it is a committee or the High Court and so on. I think that that is really going to limit access to this, and that makes the process a much lengthier one.

Again, these are people at the end of their life. People are not looking, by and large, to cut off a huge amount of their life; they are looking to shorten their death, not shorten their life. By making people go through a court appeal in addition to two qualified physicians, as well as the waiting period, I think that you are going to limit access for people who desperately want this option. It seems like that might be baked into your law, but I would say that that is a concerning feature to me. I think that you are going to limit access that way.

Dr Spielvogel: Something that it turned out was not in our law, but everyone thought that it was for a few years, and it really limited our practice, was that many people were under the impression that the physician could not bring up assisted dying with the patients, and that the patients had to bring it up themselves. That turned out not to be in our law, but that idea really hampered our ability to take care of patients, so I would strongly recommend that there not be anything like that in your Bill. People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors—we all know that this exists—even if this Bill becomes law, the general population is still not going to realise that it is an option.

I eat, sleep and breathe this. I am a primary care physician, and when I am going through the options with patients who are newly diagnosed with a serious life-threatening illness, I say, “Okay, here’s what disease-directed treatment would look like. We can continue with your chemo. Here are some side effects and complications that you might have, and here are the benefits of that. Here’s what palliative care or hospice care would look like.” Then I say, “I don’t know if you know this, but in our state we have this other option for people nearing the end of their lives when they have intolerable suffering. You can ask me to fill a lethal prescription for you to help end your suffering sooner.”

The number of times that people look at me and say, “You can do that? That’s an option here?” is astounding. I would say that nine out of 10 of patients I have conversations with have no idea that that is even legal. If they do not know it is an option, they are never going to ask for it. For physicians to do their jobs properly and deliver care to people, and for people to actually have a choice, physicians need to be able to discuss it with their patients.

Dr Kaan: I will just piggyback on that. I cannot count the number of times I have given a presentation or a talk to communities, and people—usually family members of someone who have died, not using this law—have come up to me afterwards and said, “Thank you for what you said. My loved one was interested in having this information, or wanted to talk to their doctor about it, but their doctor never brought it up, so we weren’t sure if we should be bringing it up.” It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much and, as Dr Spielvogel said, you cannot have an informed decision-making discussion with a patient if they do not have all the options available for discussion.

[The Minister for Care (Stephen Kinnock)]

Q I want to drill down a bit more on the question of training. Could you say a bit more about how the training works? Is it mandatory for everyone who takes a medical qualification to a certain standard? How many class hours are required? Is there an in-practice shadowing process? Is there an assessment process to verify that the person is qualified as a result of the training? I am just trying to get a better sense of the detail of the training. I will perhaps start with Dr Kaan.

Dr Kaan: That is a really important question, because this is a really important topic in the United States. Our laws are very clear that participation is voluntary, so there is no such mandatory training across medical training in general. It is always voluntary. If a physician or provider wishes to have training, they can seek it out. What is available and the standard of care differ from state to state. Certainly, in the state of Washington, where I am the medical director of the organisation that is most largely involved with this, the bulk of my job is doing training, mentoring and shadowing. There is no exam at the end of that process, but there is certainly shadowing and a feedback process.

I am also heavily involved with the Academy of Aid-in-Dying Medicine, which has been very active in creating professional training. We have a Journal of Aid-in-Dying Medicine, which is a peer-reviewed journal that puts out articles that are relevant to the topic. The Academy of Aid-in-Dying Medicine is now undertaking certification pathways, so each level of provider—social workers, chaplains, physicians and anyone else who might be involved in the aid-in-dying process—will be able to take these certifications. A more uniform education system will be available. We are just at the beginning of creating those, but it is very exciting, and we are very happy to have those out. A lot of resources are out there in the world already, in general, to train providers in how to do this well, and it would be really smart to have something in your Bill that outlines what the training should be, whether you will make it mandatory or voluntary and perhaps some sort of certification pathway.

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

Jack Abbott Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sean Woodcock]

Q Mr Royston, I am interested in what you had to say about palliative care and poverty. A concern of people who have spoken to the Committee has been the impact of introducing assisted dying in an era when palliative care is so patchy. Often, someone’s finances and personal income are linked to the level of care they get. Can you explain the impact that concern about finances has on dying people, from your experience?

Sam Royston: The impact on dying people can be deeply profound. I have spoken to people for whom it is difficult to even afford to put food on the table, and who are struggling to turn the heating on. There are people struggling to even power medical equipment in their home as a result of facing poverty at the end of life.

Let us remember that, particularly for people of working age, there is a double pressure here. Not only can terminal illness come with additional costs because, for example, many people require their home to be kept warm and need to buy special food and so on and so forth. For many people, their income reduces as well as a result of the person who is terminally ill leaving employment, or their partner doing so in order to care for them. Those double pressures are pushing people living with terminal illness into poverty. Inevitably, that affects their view of the way in which they live their life and their quality of life as a whole.

There are some basic things that need to be done to address this. For example, we pushed for a long time for people who are unfortunate enough to become terminally ill at working age to be entitled to receive a pensioner level of income. At the moment, if you have no other income, you can rely on receiving your normal working-age benefit entitlement, but having that pensioner level of income would provide an opportunity for retirement for those people who are unfortunate enough to become terminally ill in working age. So far, basically, it has been said that it is unaffordable. In the context of discussions about what needs to happen to improve the end-of-life experience for everyone, I think it is pretty critical that we do something big to address poverty at the end of life.

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

Q Sorry, Mr Royston, but I am coming back to you with a similar question. I do not think anyone on the Committee or, as Mr Porter mentioned, anyone who took part in our recent debate would disagree about the pretty awful state of palliative care at the moment. You are absolutely right to mention poverty and its impact on health and social outcomes. I am very sympathetic to the broader arguments you are making, but I want to direct us specifically to the Bill, because that is why we are here now. In your view, is the Bill problematic or otherwise, for some of the reasons you outlined? Will it fundamentally change any of the outcomes that you mentioned? I agree that we need to improve the situation regarding the number of people living in poverty, the state of palliative care and everything else, but what sort of change specifically do you think the Bill might make?

Sam Royston: In the context of the Bill, I am a bit disappointed. From what I can see, there are two mentions of palliative care. One is a requirement in the initial discussion for a doctor to tell somebody what palliative care is available—not whether there should be any available palliative care, but whether it is available. That could be, “No, there is nothing available, I am afraid.” I think that is inadequate.

The second reference is to having an assessment of the availability of palliative care after five years. I do not know why we are waiting five years after the Bill becomes an Act for an assessment of the adequacy of palliative care. We do not have such an assessment at the moment, and we absolutely need one. That is why we have recommended an additional clause that requires an assessment of the availability of palliative care, and a long-term funding strategy to enable that to be put in place. There are substantive things that could be done to the Bill to improve it in that regard.

[Jack Abbott]

Q I sympathise totally with what you are saying about palliative care, but the principle of assisted dying is the main thrust of what we are debating. Will the principle of assisted dying, should it be introduced, fundamentally change, positively or negatively, many of the things that you have been describing?

Sam Royston: I have heard on occasion this idea that we are dealing with assisted dying, and palliative care is another issue. To be honest, I am a bit tired of the “jam tomorrow” argument that says, “We will sort this out today. Palliative care is important, but we will sort that out another time.” We need to get palliative care sorted out and improved right now, as part of the Bill, because they are fundamentally connected.

This Bill is about choice. It is about choice at the end of life. If people cannot choose to access palliative care, they cannot make a free choice about the care and support that they receive. They cannot make a choice about whether they can get the pain relief that they need. They cannot make a choice, often, about where they would rather die. They cannot make a choice about who they have around them at the end of life. They cannot make those choices if they do not have access to proper palliative care and the support that they need. That is why I would say that the issue of palliative care is intrinsic to the Bill. The two are fundamentally connected. You cannot have one without the other.

[Jack Abbott]

Q I have a short final question. Is Marie Curie’s position basically that if palliative care does not improve, assisted dying should not be introduced in this country?

Sam Royston: We are neutral on the question of whether assisted dying should be introduced. We are not neutral on the question of whether palliative care should be improved.

[Kim Leadbeater]

Q Thank you, witnesses, for joining us this afternoon. The good news for us all, on the palliative care conversation, is that we have in the room the Minister responsible for palliative care, who has heard those arguments loud and clear. Indeed, Second Reading showed that there is a huge amount of good will in the House for improvements in palliative care. I agree with you, Mr Royston, that it is not an either/or. We have to do both, and I think this House is very keen and prepared to do both. Hopefully, the implementation period will provide some reassurance, because this will not happen for a number of years. We have got time to make those improvements alongside each other while still giving terminally ill people the choice that I firmly believe they deserve.

Dr Neerkin, on that point, yesterday we heard a range of views from palliative care professionals, and there are a range of views within the sector around assisted dying. Could you tell us a bit about your views as a result of your more than 25 years of experience as a consultant physician in palliative medicine?

Dr Neerkin: First of all, death and dying is not owned by palliative care. We are hearing a lot about palliative care, but we have also heard from GPs that they deal with a lot of death and dying, as does every other speciality. So first of all, we do not own death and dying. I think a lot is being put on palliative care, and palliative care is not a panacea for everything at the end of life. This is multifactorial; it is about good medical care, good social care, good care in the community and everything that can be provided for people of all backgrounds and all abilities and disabilities. I think that is really important to begin with.

I am very lucky to work in a trust that has a huge amount of backup for palliative care, interventional pain control and psychology. We have great backup to provide great end of life care, which is not available all across the country. Despite that, there is still a need for assisted dying, because that does not answer every single question. What I have seen over the years is that people want some control when they lose all other control and they do not feel dignified. It is not just about being a burden; they do not want their loved ones to see them suffering and to lose all dignity in front of their loved ones, as they are doing. As we see in other countries, people want to have that choice. It does not necessarily mean they will take it up in the end, but to know that they can choose assisted dying is incredibly important to them, and it gives them advocacy and a bit of autonomy and control where they lose control.

Those are the questions that are brought to me when people say, “Can you not just hasten this death?” People just want to have the conversation around it. Even if I were to say to them, “If I had a tablet here and now that I could give you, would you take it?” probably eight out of 10 times people would say no, because inherently people have a will to live. We are talking very much about dying and people wanting to die, but most people I treat and most families really want their loved one to live. It is just about being able to have the choice and feeling that, if things become unbearable for them, or they feel they have lost all dignity and all control in a situation, they have got a bit of control left.

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

Jack Abbott Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

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

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

Q Dr Fellingham, given your experience of both the British and the Australian healthcare systems, do you believe there are any fundamental differences that would affect how assisted dying is implemented in this country? If there are, how might we be able to mitigate them?

Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can.

The healthcare systems are broadly similar. We are both first-world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for joining us this morning. I am interested in following up on what Dr Mewett said about the relationship with palliative care, which has an important role to play in end of life treatment. What is the relationship between assisted dying and the palliative care world like? Also, I would like to hear a bit more about the multidisciplinary board, which I think you set up, Dr McLaren. What does the multidisciplinary approach look like in your jurisdictions?

Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.

That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.

I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.

--- Later in debate ---

[The Chair]

Thank you. This will have to be the last question.

[Jack Abbott]

Q I have a question for Mr Amin. You worked on the judicial review of Noel Conway in 2018. For the benefit of the Committee and those watching, Mr Conway had terminal motor neurone disease and he looked to bring a judicial review in order to have the option of assisted death, when he was in the final six months of his life. Mr Amin, what were your experiences from that case that may inform the Committee’s learnings when looking at the Bill?

Yogi Amin: Mr Conway was an extremely intelligent and brave individual who campaigned in this area. His strong view about autonomy led him to bring that case, and what he was arguing for in that case forms part of what you have here in the Bill. He was certainly asking for a process in which a decision could be made and some robust safeguards could be provided, which would end up with a court process, and that is what you have within the Bill. I also learned through that case, and others over the years, what the Human Rights Act, the European convention and parliamentary sovereignty mean here. On all three counts, the cases have always said that it is Parliament that makes the decision—so it is you who are deciding. I do not see a court overturning that.

The courts in the Conway case—the High Court, the Court of Appeal and the Supreme Court—were all very clear that it is a matter for Parliament. I really do not see the European Court of Human Rights overturning it in any way at all, and that is from my long experience. The margin of appreciation is very strong with this Parliament to make the decision. I also think, from a drafting perspective, the Bill very carefully defines the individuals—it has drawn the line. Certainly, the courts cannot do it; they cannot extend that line and they will always defer back to Parliament. If you craft the Bill as it is, I am very confident that it will be left here.

[The Chair]

Order. I am terribly sorry but we are out of time.

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

Jack Abbott Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

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

Q On that point about palliative care, I will direct my question to Dr Furst. What has been the response from palliative care professionals to the introduction of assisted dying in Australia? We have heard evidence from people working in the sector in the UK, but I am keen to hear about your experience in Australia. I understand that Palliative Care Australia’s national workforce survey explicitly looked at this, so I am keen to hear what its findings were.

Dr Furst: It has been a journey, certainly. Victoria started their voluntary assisted dying in 2019. I would be lying if I said that the palliative care community were completely on board with it at that point, but over the last five to six years there has been a real shift in mentality. We have seen that they can go hand in hand. Palliative care is about end-of-life choices. Voluntary assisted dying is about end-of-life choices. It is about putting the patient and the individual front and centre, and working with them. That is fundamental to palliative care. We have realised that voluntary assisted dying is a promotion of palliative care and it gives back choices.

Probably some of the older palliative care clinicians have not embraced voluntary assisted dying quite as much. That is probably very generalised, but certainly new consultants and new doctors that are coming through really see this as something that they want to do. I do not think that there is any animosity any more between the practitioners that choose to work in this space and those that do not. I get huge amounts of support from other palliative care physicians that do not necessarily act as practitioners. There is no real divide. It has been embraced, to be honest. In another five years, I think there will probably be very few palliative care practitioners who do not support this, unless they are true conscientious objectors for their own reasons—I guess, probably religious reasons. Palliative Care Australia and the peak medical bodies in Australia have generally shifted to see this as part of patient choice.

Alex Greenwich: The journey to voluntary assisted dying in New South Wales, and indeed across every Australian state, has benefited palliative care access and funding. In New South Wales, 85% of people who have accessed voluntary assisted dying are receiving palliative care. As part of the process, the co-ordinating and consulting practitioners also advise them on palliative care. The doctors are trained on the latest advances in palliative care. Baked into the principles of our legislation is access to palliative care for all citizens of New South Wales. Importantly, throughout our debate, whether Members supported or opposed the reform, our entire Parliament came together to ensure palliative care received an increase in funding and any access issues were addressed. The Australian experience with voluntary assisted dying is that it benefits and strengthens the palliative care system.

Professor Blake: Can I can I add to that? The Voluntary Assisted Dying Board in WA, as in all the other jurisdictions, produces a report. The very strong sentiment of the Voluntary Assisted Dying Board, and indeed within the Western Australia community, is that voluntary assisted dying is seen as part of the end-of-life journey. The board’s report states that the statistics and experience of Western Australians

“confirms…that voluntary assisted dying is an established and enduring end of life choice”.

For that reason, there has been quite a significant awareness that practitioners should be able to bring up voluntary assisted dying with the patient as part of that suite of end-of-life choices. That has been something that the evidence has suggested is very important, because if the practitioners are feeling that they cannot raise it in that context, that is having a detrimental effect on the patients who would like information on it. That has been our experience in Western Australia.

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

Q My question is to you, Mr Greenwich. I understand that in New South Wales—and please do correct me if I am wrong—similarly to the Bill we are proposing, you adopted legalised assisted dying for those who are terminally ill and will die within six months, but you also added an additional criterion, which was within 12 months for a neurodegenerative disease such as motor neurone disease. That element is not proposed in our Bill, but we have heard from other witnesses over previous days about that issue. What reflections might you have regarding that, and why did you add that element into the Bill beyond the six months that we are proposing here?

Alex Greenwich: Thank you very much for your question. At the outset, I will just stress that every jurisdiction should legislate the form of voluntary assisted dying that is appropriate to them. In New South Wales, that was six months for a terminal illness, or 12 months if that terminal illness was a neurodegenerative disorder. We had learned from the other schemes in Australia that that was going to be important because of the decline that occurs in neurodegenerative disorders like motor neurone disease, for example. It was because of that that we went down that path.

Professor Blake: I should add that in Queensland, there is no such distinction in life expectation between other diseases and neurodegenerative diseases. Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses. The Queensland Parliament took a different approach to address that particular feedback.

Dr Furst: From South Australia’s perspective, we are similar to New South Wales; we have less than six months for all conditions bar neurodegenerative conditions, which is less than 12 months. As a clinician, personally, I think that 12 months for neurodegenerative conditions is really helpful, because—as you have heard—if you are looking at prognosis and trajectories, with things like cancer, a patient will be going along and then often have quite a steep and rapid decline. That six-month prognosis is quite noticeable, but for patients with conditions like motor neurone disease, their decline can be slow and very distressing to them. Also, when trying to balance the prognosis along with getting them through the process, 12 months is really helpful, so if there was any chance, I would be strongly advocating for that.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you to the witnesses for joining us this morning. I would like to address my comments to Alex Greenwich, if I may, but also come back to Dr Furst and Professor Blake.

It is really valuable for us as a Committee to hear your reflections on the experience of the process of passing this legislation. How did you manage to keep that process patient-centred but also take into account the concerns around the broader societal issues, particularly when it comes to equality and human rights—those really important issues? What was that process like, and what are your reflections on it? Also, Dr Furst and Professor Blake, one thing that I feel really strongly about is having really good training around assisted dying, and end-of-life care and choice. Would you like to make any comments on what that looks like?

Alex Greenwich: Thank you very much for that question. I will take you through a little bit of the journey to voluntary assisted dying in New South Wales, what encouraged action, and then the safeguards that we put in place.

The New South Wales coroner had reported to us that there were a number of really horrible suicides of people with terminal illnesses who felt they had no option—that those were cruel and lonely suicides. That was backed up by paramedics and police who would arrive on site. Myself and my parliamentary colleagues decided, “We can do better, and we can regulate in this space.” Voluntary assisted dying in New South Wales is an important form of suicide prevention. What voluntary assisted dying does, in the model that we legislated, is ensure that a person who has a terminal illness and knows that it is going to be a cruel and painful end of their life is instead directed to a doctor—a doctor who will be able to take them through all of their palliative care options, provide and link them with social supports, and give them the choice to have a death that is better than their illness would otherwise provide.

It has been important to make sure that our legislation is limited to that cohort of people who are terminally ill and know they will have a cruel end of life. Our legislation is not about people with anorexia nervosa. It is not about people with a disability. It is not about people who are feeling a burden. It is about a very limited and narrow cohort of people who know that they are going to have a very cruel and painful end of their life, and want that control to know that they can have a death that is better than what their illness would otherwise provide.

We have ensured that decision-making capacity needs to be enduring. We have ensured that a person cannot be under any form of coercion. We ensured that we had a really strong period of implementation, from the time the Bill was passed to 18 months later, when it came into effect, to make sure that our health system and the various doctors required training.

In New South Wales, the experience of voluntary assisted dying is that it has been a form of suicide prevention, and that it has also been, as I explained earlier, very pro-palliative care. As I reflect on our parliamentary debate, it was also one of the first times that our Parliament had grappled with the concept of death. We were very honest about it, and we were very honest in having to admit that we are all going to die, that there are some people with some terminal illnesses who are going to die in a really cruel and painful way, and that we could provide them with an option of control, peace and respect. We believe, and our annual reports into our legislation indicate, that we have been able to provide that. I am happy to answer any further questions, but I will wrap up on that.

Professor Blake: Given that the Western Australia legislation has been in force rather longer than the other jurisdictions that have been talked about today, we have had the opportunity to reflect upon it—I am speaking here as a lawyer; I assume that is why I have been invited to talk—and that has revealed some of the very good things about the working of the legislation, but also some of the challenges that have emerged.

As Dr Furst has said, the legislation in all Australian jurisdictions varies slightly, but it follows a particular legislative model, and is highly prescriptive. It requires a number of requests and, in Western Australia, assessment by two different practitioners. In Western Australia, there is no judicial double-checking of that process. Although I note that that is contemplated within the UK law, that is not something that we have found to be necessary or even appropriate in Western Australia, and I think that would be the case in other Australian jurisdictions.

One of the issues we have experienced is that there is a struggle to get people to take up the training, whether that be medical practitioners or nurse practitioners. One of the thoughts around that has been the very prescriptive nature of the model, which requires a lot of work on the part of the practitioners. It is worth bearing in mind when looking at your piece of legislation that the more prescriptive it is, the more work it requires on the part of practitioners, and that is a lot of work. We need those people to undergo the training in order that the process is done properly and all the safeguards that are included within the legislation—and they are extensive—are respected. That is something to bear in mind.

We have prescriptive provisions around capacity and voluntariness and lack of coercion. I would add that we also have a requirement around residency. If we are looking at when the legislation has come before a tribunal or judicial body, the only circumstance—in Western Australia, at least—where it has come before the tribunal, which is the State Administrative Tribunal, has been where the practitioner has regarded the patient as not eligible on the grounds of not fulfilling the residency requirements. There has been no other ground on which a matter has been taken to a judicial body.

You asked about the training. That is an essential requirement for practitioners who are involved in making assessments and in the whole process. It is intrinsic to the operation of the Act. The feedback I have heard is aligned with what Dr Furst has said—that no divisions have arisen within the practitioners here, and that those who have chosen to do the training are indeed very valued and very much appreciated by the people who have accessed the scheme.

I will say two more things about the regulation. One is that in the report that has been handed down, the only negative feedback has been about delays. That has been identified as being due to a lack of education among health professionals. One of the recommendations of the report is that education really needs to increase so that people’s journey on VAD is not unnecessarily delayed and, perhaps, their wishes are not able to be granted.

The second thing is on conscientious objectors: 13.7% of applications for VAD in Western Australia from 2023 to 2024 were declined on the basis of conscientious objection. But in Western Australia, unlike some other Australian jurisdictions, if a practitioner declines to become involved in the process, they are required by law to give the patient an information sheet outlining options around voluntary assisted dying. That is actually mandated in the legislation.

I have probably said enough for now, so I will hand over to Chloe.

Dr Furst: I completely agree with Meredith that the training is fundamental. For most jurisdictions, it probably takes a full day. It is often an in-person event followed by an exam, which you have to pass. In South Australia, we had a whole lot of mandatory questions that you actually had to pass to be eligible, to make sure that you were upholding the legislation.

This is so different from anything else in medicine. In any other part of medicine that I practise, if I see a process that I think can be improved—if I see efficiencies that can be made or bits of the system that are not adding to patient care—I can choose to adapt the process as I see fit to give the patient the care that I want to give or that is compatible with what the patient wishes. That is so different from voluntary assisted dying, where, as Meredith said, it is so legislated, down to who can be a witness for various documents. As a doctor, the amount of documentation that is required for voluntary assisted dying is second to nothing. We just do not do that kind of documentation in any other areas of medicine. So it is quite different, and it really does require being quite precise around that documentation and making sure that you are meeting all the timeframes and guidelines. The training is hugely important in terms of the operational component.

There is also the training around end of life and conversations, and how you support the patient and the families. That is a lot harder to teach. That is, I guess, why people will fall into this, and why a large number of palliative care doctors will do it—because it is already second nature to them or they already have the relationship with the patient and they see these conversations as something they are good at and good at facilitating.

So there are two parts of that training that are really important, and then, as Meredith said, there is also the training we need to be giving to the rest of our workforce, and really all health practitioners. A patient might ask the social worker, the orderly or the dietician about assisted dying, and they have to know how they can respond and how they can connect that individual to the right practitioner. That is really important. We have done a lot of work in South Australia, as all the other jurisdictions have, around upskilling the whole workforce, because this is everyone’s role and job.

I also wanted to speak briefly on what we in South Australia call the gag clause. In South Australia and Victoria, we are not allowed to bring up voluntary assisted dying with patients, and that is really, really problematic. From my perspective, it leads to poor provision of care. In medicine, when I am talking to a patient, in every other area, if they needed treatment, I would be obliged, and it would be good practice, to tell them about all the treatment options that are available to them. If someone had cancer, I would want to be telling them about good palliative care, potentially surgery, and radiotherapy and chemotherapy, yet voluntary assisted dying is the one thing we are not allowed to talk about and is taken off the menu. Some people may not know that voluntary assisted dying is available to them. They might be waiting for me as the doctor to bring it up to them. I have brought up every other option for them; why am I not able to talk about voluntary assisted dying? I just think it is really important that we do not stigmatise voluntary assisted dying and that we see it as a valid option for people.

Professor Blake: To add to what Chloe said, in Western Australia practitioners can raise voluntary assisted dying as long as it is in association with other end-of-life choices, but the way the legislation is worded is confusing, so one of the recommendations in the most recent report is that that be removed altogether so that voluntary assisted dying is treated like any other treatment option. As Chloe indicated, the evidence was that treating voluntary assisted dying differently can compromise the whole end-of-life journey, because it interferes with discussion of other end-of-life options. The strong recommendation from the board is that it be removed altogether and that voluntary assisted dying be treated just like any other appropriate treatment option so that the patient has a true choice.

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

Jack Abbott Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

Thank you.

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

Q286 Professor Owen, you have talked extensively about the complexity of the Bill. I think it fair to say that our previous witnesses this week believe that the simplest safeguards are the safest. I stress that the simplest does not necessarily mean the weakest; it means a straightforward plan. Do you agree with the points that the chief medical officer and others have made about simplicity? Where do you stand on that, and on the broader point about complexity?

Professor Owen: I am somewhat reminded of the old adage that for every complex problem there is a simple solution that is false. We are dealing with complexity here—I think we have to accept that—but complex law or poor law will not provide good safeguards. If you step back and think about what the Bill is really about, at its simplest, it is about the decisional right to end one’s own life in terminal illness.

Associated with that is the concept of mental capacity. I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill, they are complex, but the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.

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

Q To elaborate on that point, Professor Owen, the Mental Capacity Act 2005 sets out the principles that a person must be assumed to have capacity, that a person cannot be treated as lacking capacity unless all practicable steps have been taken to support them and that a person cannot be treated as lacking capacity merely because their decision is unwise. Is it those issues that are causing you concern about capacity, or is it something else?

Professor Owen: It is a bit more fundamental than that, actually. If you look at how mental capacity features in the Bill, the test or the concept that clause 1 rightly invites us to consider—rightly, I think—is the capacity to decide to end one’s own life. The Mental Capacity Act comes in at clause 3.

I have looked at mental capacity a lot in research, and there is no experience of the decision to end one’s own life. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. The reference to the Mental Capacity Act in clause 3 puts you into an area where there is no experience of the central capacity question under consideration. It is very important that Parliament be clear-eyed about that. I can talk about the Mental Capacity Act in detail if you like, but that is the main point that I want to make.

--- Later in debate ---

[Sean Woodcock (Banbury) (Lab)]

Q My question is for Claire Williams, about the drugs that are used in the various jurisdictions and how that interplays with your view on whether this law comes into place. What are your views on the drugs that would be put forward for assisted dying?

Claire Williams: I am not familiar per se with the types of drugs that will be used for assisted dying cases. In terms of my experience in research ethics, we make life and death decisions on a daily basis and decide whether we would offer patients the opportunity to take very experimental drugs. That is particularly difficult when dealing with terminally ill patients. What is so beneficial with using a committee-based model is that those decisions can be made collectively—decisions that are very similar and have real parallels in terms of ensuring that patients have fully consented, that they have capacity and that there is no coercion involved in recruiting them to clinical trial. That is how I see those parallels and how I feel assisted dying cases should be considered.

[Jack Abbott]

Q Professor Preston, you have extensive research into palliative and end-of-life care. It would be really helpful for the Committee if you could describe some of the underlying motivations about why people come to the decisions they do when choosing end-of-life care, and how you feel assisted dying would sit as an available option for those making those decisions, if it was available.

Professor Preston: The decision to go into palliative care is often made more by a clinical team, recommending that there be changes in the goals of care and what we are to aiming do. There are two big European studies looking at that at the moment, in chronic obstructive pulmonary disease and cancer. It is about trying to get triggers so that those changes in care can happen, because people cannot make decisions unless they are informed and they are aware.

Equally, when it comes to assisted dying, we have done interviews with bereaved families and healthcare workers in the United States, the Netherlands and Switzerland, and also with British families who access assisted dying through Dignitas. We hear from the family members that it is something they have really thought about for a long time. It might come to a crunch point where they know they are potentially going to lose capacity, they are potentially going to lose the abilities that are important to them—although for someone else, losing them may not be an issue.

That is when people start to seek help. They usually first seek help from one or two family members. There is often secrecy around that, because you do not want everyone talking about it. It is quite exhausting to talk about. It is a decision you have made. Then they seek help from healthcare professionals, and that is where they get a varied response depending on who they access. It is a bit of a lottery, because it only a minority of doctors will be willing to do this. That is where the challenge comes in.

[Dr Shastri-Hurst]

Q Professor Preston, in your written submission, you effectively propose reversing the presumption of capacity that is set out in the Mental Capacity Act. Could you go into a little more detail about that and the reasons behind that proposal?

Professor Preston: The submission was with my colleague, Professor Suzanne Ost, who is a professor of law, and that very much came from Suzanne.

I think the aim is to have that bit of extra concern, so that we do not presume capacity, but instead almost presume that there is not capacity. It would be a bit like if you go to A&E with a child and they have a fracture. The presumption there is to ask, “How did this happen?” and “Do we need to rule anything out?”, rather than just assuming “Well, they have just fallen over” and that things are exactly as said. There is an element of that, where we are not presuming capacity, but are actually going into it and switching it around within the training to ask, “Do they have capacity?”. I think that would be a change within the Mental Capacity Act.

--- Later in debate ---

[Tom Gordon]

Q We have had a lot of conversations and taken a lot of evidence over the last few days about a gag clause to prohibit medical professionals raising assisted dying as part of the options at end of life. We have heard from different states and jurisdictions on whether or not that is something that they had. Broadly speaking, the consensus was that it did not seem to work. Dr Mulholland or Dr Price, I wondered if you had any comment on that.

Dr Mulholland: That is something we have been thinking about carefully at the RCGP. Part of our normal discussion will often open it up for patients to lead discussions around their end of life. We see there could be potential restrictions for that clinical consultation with a gag order. We very much follow the opinion I heard from Dr Green from the British Medical Association earlier in the week. We go along with that.

We are very protective of our relationship as GPs, and want to give patients the options that they might want to choose for themselves. We are not usually pushing anyone to any decision, but supporting them through their end-of-life journey. We would want to protect that in whatever way, so we therefore feel that a service we can signpost to would be the most appropriate thing as the next step.

Dr Price: As a psychiatrist and as a representative of the psychiatric profession, it is noted in the Bill that mental disorder is a specific exclusion. It is very unlikely that a psychiatrist would suggest or bring up assisted dying in a conversation.

I think a concern allied to that is people with mental disorder who request assisted dying from their psychiatrist. It may be clear to all that they do not meet eligibility criteria for that, but it is not absolutely clear in the Bill, as it is written, to what extent a psychiatrist would have to comply with a wish for that person to progress to that first assessment. There is quite a lot involved in getting to that first official assessment, such as making a declaration and providing identification. A psychiatrist might therefore have to be involved to quite an extent in supporting that person to get there if that is their right and their wish, even though it may be clear to all that they do not meet eligibility criteria if that is the primary reason for their asking to end their life.

[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.

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

Jack Abbott Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Dr Shastri-Hurst]

My hon. Friend makes a valid point—the Committee can see that I was an orthopaedic surgeon, not an endocrinologist. It is not necessarily a progressive condition; it is a condition that can be managed and maintained. It does not fall within the wording of the Bill. We are not talking about a condition that is inevitably progressive, and for which there is no treatment option available to pause, reverse or prevent its progression. We are talking about a relatively limited group of conditions that will inevitably lead to death when someone, for want of a less blunt phrase, has reached the end of the road in terms of their therapeutic treatment options.

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

rose—

[Sarah Olney]

rose—

--- Later in debate ---

[Jack Abbott]

I am grateful to the hon. Member; he has given way a number of times, and I am sure he wants to make some progress. To return to the scope of the debate—I am sure you will be delighted to hear that, Ms McVey—part of the rationale cited for making this change from “capacity” to “ability” is depression, and given what we are talking about, there is a very real possibility that someone will become depressed after diagnosis. In the hon. Member’s experience, are patients with a clinical diagnosis of depression currently deemed capable under the Mental Capacity Act of making potentially life-changing decisions about treatment or whatever it might be? Are there any scenarios in which he would offer or remove certain treatment because of their depressed state? What I am getting at is that there are a huge number of scales and considerations to factor in with depression, but does the Act allow us to look at those when it comes to depression?

--- Later in debate ---

[Daniel Francis]

I thank the Member in charge for her comments. That is the conversation we had when she invited me to join the Committee, and we will continue to have conversations as amendments come forward.

My concern is about some aspects of the Mental Capacity Act, which was not written for these scenarios, and the hon. Member for Richmond Park talked in particular about the statutory principles in it. I am not an expert on these issues, and my hon. Friend the Member for Stroud behind me is more of an expert on some of them. However, there is no obligation in the code of practice under the Act to consult carers involved in a person’s life. The code says:

“if it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.

Therefore, given the way the Act and the code of practice are worded, there is no obligation in the scenarios I am discussing.

There is another issue I was going to raise before I took that intervention. Mencap does considerable hard work. At my local branch, there are many people whose parents are in their 70s and 80s and have cared for their child all their life. I am not being rude, but their child, who is in their 40s or 50s, does feel like a burden to their parents. They know the obligation their parents have to care for them for their whole life. I ask Members to consider what the Mental Capacity Act says: those adults are at a level of capacity to make decisions, but they have been supported in those decisions all their lives and do not—

[Jack Abbott]

We have spoken a lot today about further safeguards and provisions, beyond the Mental Capacity Act. However, I note that my hon. Friend has tabled amendment 339, which states that if a

“person has a learning disability or is autistic”

they

“must be provided with accessible information and given sufficient time to consider it”

and that, additionally, there must be a “supporter” or “advocate” with them. If that amendment was passed, would that satisfy some of my hon. Friend’s concerns about the Act?

[Daniel Francis]

I am hearing that that amendment will need some rewording, but it would address some of my concerns. I am working with Mencap, and further amendments will be tabled to later clauses of the Bill. I understand that one of our colleagues has also tabled amendments, which I welcome. However, I would still have concerns about the interpretation—and there are different interpretations—of the current code of practice when it comes to the involvement of carers and loved ones. Those concerns brought me to the place I came to on Second Reading. I did not seek to be the person standing here; indeed, a year ago, not only did I not believe that I would be a Member of Parliament, but I did not believe that I would be on this side of this argument. It is this particular point that has driven me to this position.

I will talk a little about evidence. The Law Society has a neutral position on the Bill, but it has said that, before the provisions become law, a comprehensive consultation should be undertaken to allow resident experts to share views on the appropriate definition of capacity for the purposes of the Bill. That is the position of the Law Society.

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

Jack Abbott Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Naz Shah]

The hon. Member for East Wiltshire answered that question eloquently earlier. Although the outcome is the same, we are asking two different questions. The question is not about turning off and unplugging a machine; it is about whether someone will take drugs to end their life.

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

To follow the basic premise of your argument—

[The Chair]

It is not my argument.

[Jack Abbott]

It is not your argument, Sir Roger; it is my hon. Friend’s argument. I apologise.

To follow the basic premise of my hon. Friend’s argument, she is saying that the Mental Capacity Act is not tried and tested for what we are discussing. However, by definition, neither is this amendment; if anything, it is even worse, because words such as “ability”, which we are discussing here, have absolutely no basis, as was admitted by the hon. Member for East Wiltshire. On that basic premise, my hon. Friend will not agree with any amendment that is tabled today, because none of them is tried and tested. Is that correct?

[Naz Shah]

My hon. Friend is not wrong, in so far as there can be two truths. There is a truth, for me, that the Mental Capacity Act does not deliver what we need it to deliver, and that is the concern we have heard from people who have given us evidence. We have not talked about the word “ability”—as hon. Members have pointed out, it is not set out in law—so there is a conversation to be had.

As my hon. Friend the Member for Spen Valley, the promoter of the Bill, clearly stated, this is about strengthening the Bill and bringing the best Bill to Parliament to give people a choice. That is what this is about.

[Danny Kruger]

The hon. Member is making such an important speech, and I am very grateful to her. This is a crucial discussion. The hon. Member for Ipswich suggested that the amendment would make things worse because it would apply a new test.

[Jack Abbott]

I was just following the argument.

[Danny Kruger]

I respect that. The hon. Gentleman is suggesting that there would be a new test, but it is for a new situation. I want to alert the Committee to the purpose behind this amendment. I understand that we are in a slightly polarised discussion. The hon. Member for Bradford West and I both voted against the Bill on Second Reading, and it is not likely that we will ever support it. Nevertheless, I encourage hon. Members to consider that the amendment, which was tabled by the hon. Member for Richmond Park, who is not opposed to assisted dying in principle, is genuinely trying to ensure that the Bill is as safe as it can be. All that has been proposed, as the hon. Member for Bradford West suggests, is a strengthening and a recognition of the importance of the principles of the Mental Capacity Act, without the—

--- Later in debate ---

[Naz Shah]

I am grateful to the hon. Gentleman for his correction. To clarify, I do not think anybody in this House disagrees in principle with the idea of not letting people suffer. I am very much about principle, and I came to this Committee very much in that spirit. When I was asked to join this Committee, I had to sleep on it, and I now realise why.

I am grateful for the interventions from my hon. Friends the Members for Rother Valley and for Ipswich. There are a couple of things that are important for us to understand. The Mental Capacity Act has not been tried in any of the other jurisdictions across the world on which we are basing this law, so we cannot make a comparison.

On the issue of whether it is either/or—whether it is the Mental Capacity Act or the word “ability”—the Secretary of State has the power to change that. If we are to be true to the spirit in which we have come to this debate to make the Bill as safe as possible, given that so many psychiatrists and experts have said that they are not convinced that the Mental Capacity Act is fit for purpose in this regard, surely it is incumbent on us to make that case.

[Jack Abbott]

My hon. Friend said that the Mental Capacity Act is not tried and tested, and I was challenging the premise that we should apply a concept that is not tried and tested in this or any other country. She is saying, “I can’t support the Mental Capacity Act in its current form because it is not tried and tested,” but, following that argument, she would presumably not support this amendment or any others because what they propose is also not tried and tested.

[Naz Shah]

This amendment is an attempt to have that conversation and to strengthen the concepts that we are debating. That is the whole point of the Committee. As my hon. Friend the Member for Spen Valley said, there is no point in having witnesses if we do not listen to what they say. This is what the witnesses said.

My hon. Friend the Member for Ipswich makes a valid point. He asks whether I would, by that definition, support this amendment. I support it because it has led to a debate that we have had all morning, and that we are carrying on into the afternoon. As it is, the Bill does not give me confidence, whether it is due to the use of the Mental Capacity Act or the definition of “ability”. I feel that it needs to go much further, perhaps through the Secretary of State tabling another amendment at a later point.

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

Jack Abbott Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Naz Shah]

If we make philosophical and idealistic arguments, we will not be able to legislate on anything. Philosophically, there are people in this House who wear red, blue, green or the colours of smaller parties. We are all different in our positions philosophically. For me, this process is about legislating as well as we can to put safeguards in place that are as strong as possible. I cannot get into that debate because it would not apply to the legal aspect.

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

To move away from the theoretical, like my hon. Friend the Member for Rother Valley I am sympathetic to what this amendment is trying to do. To give a practical example, let us say that I have been given a terminal diagnosis and say to the doctor, “I personally do not want to go through pain and agony over the next few months, but I am also thinking about my family—I do not want them to suffer alongside me.” I would therefore fall under the definition in this amendment—the hon. Member for Bradford West is shaking her head, but the reality is that I would—because I would also be acting for the benefit of others; I have cited that alongside my own physical pain as a potential reason that I want to do this. As I say, I am sympathetic to what the amendment is trying to do, but I feel that the way it is written would inadvertently include a huge amount of people who are doing it for their own motivations, but clearly the reality of life is that we consider other people as well.

[Naz Shah]

The hon. Member makes a valid point that it would ultimately benefit others. It would—that is a given—but that was not my reading of the way the amendment is drafted. My reading was that “only for your own benefit” means that someone is not being driven by the benefit of others, financial or otherwise. From the point of view of autonomy, if someone chooses to make that decision, of course others will benefit. I take the point that there appears to be a contradiction, but that is not my understanding of how the amendment is written and it is not what I am talking about.

[Jack Abbott]

My hon. Friend mentions the word “only”, but that word does not appear in this amendment. That is the issue: we are opening this up. The amendment says:

“acting for their own sake rather than for the benefit of others.”

In my example, I cited the benefit of others as potential reason that I might seek this.

[Naz Shah]

The hon. Member makes valid point. Maybe the Government would be able to mop this up if this amendment was accepted. That can happen—it is not beyond the scope of Government or the Ministers present.

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

Jack Abbott Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Danny Kruger]

I will be quick, Mr Efford. I appreciate that we have been exhaustively over the detail of the amendments. I deeply regret that none of the amendments that were tabled to introduce stronger safeguards has been accepted. I want to take this opportunity to explain briefly what the Committee has done by rejecting those amendments and what we will be doing by agreeing to the clause without the amendments. I will not seek to divide the Committee on the clause, because I recognise that it enables the whole Bill to proceed, as the House wished on Second Reading, so I recognise that the principle of the Bill is represented in the clause. We wanted to tighten it, but have failed to do so.

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

I say gently to the hon. Member that—particularly on the previous clause—I have been very sympathetic to several of the amendments. Candidly, however, with due respect to all the hon. Members across the House who submitted this, I do not think that they have been particularly well written. I think that they leave quite a lot of ambiguity in a lot of areas. We had a discussion in the week before the recess, on a number of areas, about the word “only”. I heard it suggested earlier that the principle is about the spirit in which things are taken.

The reality is that I am very sympathetic to a lot of what is proposed, but a number of the amendments leave quite a lot of open ends. That has been a particular issue. I have been very open and have said that in principle I am supportive of assisted dying, but that I could not support it because the Bill was not strong enough in its current state. I do not think that the amendments tabled so far will strengthen the Bill; in fact, they might leave a lot of open ends, despite the very good intentions behind a lot of them.

[Danny Kruger]

I am grateful to the hon. Gentleman for explaining why, having opposed the Bill on Second Reading, he now seems to be supporting it. I wish I had heard, during our debates in the past two weeks, his specific objections to the amendments. If he felt, as he says, that the Bill is not strong enough, we would have welcomed his own amendments to strengthen the Bill in a form of words that he would find adequate. Perhaps that is what we will hear from him.

[Jack Abbott]

I did articulate a number of times where I felt that some of the amendments were not tight enough in those areas.

[Danny Kruger]

The hon. Gentleman has been on his feet; I appreciate that and am very grateful for his contribution to the debates that we have had.

I simply want to make the point that what the House voted for on Second Reading was the principle of assisted dying. What many members of the public who support the Bill think they are getting is a Bill that is safe—a Bill that is restricted explicitly to people at the very end of their life, who face extreme pain and suffering as they die; who are fully informed of what they are doing; who face no questions of external or indeed internal coercion; who have the absolute ability to understand what they are doing. Those are the things that people want to see in the Bill; those are the things that we have sought to effect through the amendments that we have tabled, and which the Committee has rejected.

Very explicitly, as a result of the rejection of these, I believe, very plainly written amendments, the fact is that under this Bill you can be depressed and suicidal and still regarded as having capacity to have an assisted death. You can be very marginalised—you can be a prisoner, you can be homeless—and still be regarded as eligible. You can have been influenced or encouraged by others and still be eligible. You can do it because you feel a burden. You do not need to be in any kind of pain. You do not need to be in the tiny proportion of cases that palliative care cannot help. As the hon. Member for Spen Valley accepted in the previous sitting, you can seek an assisted death for the sole reason of saving your family money, and you would be granted an assisted death on those grounds. The fact is that in rejecting these amendments, the Committee has decided and has demonstrated that the Bill is much wider than the campaigners portray.

I want to end with this point. I think there are two ways of approaching assisted dying—two essential framings of a Bill to legalise it. One is an autonomy Bill, which simply says that if people seek help to commit suicide, within certain broad parameters they should be able to do so, and there is no question of other people interfering with that choice; if they sign the requisite paperwork, they should be able to have an assisted death. The alternative is what we might call a safeguarding Bill—one where eligibility for the procedure is strictly limited and there are very strong, robust safeguards in place to protect the most vulnerable people.

The hon. Lady, and Members speaking in support of the Bill, have repeatedly emphasised that this is a safeguarding Bill. They want this Bill to be built around safeguards for the vulnerable. They respect the arguments that we make about the dangers that an open-ended assisted dying Bill would create. But the fact is that, as we have seen in the course of the debates on this clause, this is not a safeguarding Bill; it is an autonomy Bill. It is one that allows people to proceed to an assisted death because they want one, if they meet certain very loosely drawn criteria.

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

Jack Abbott Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Stephen Kinnock]

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

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

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

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

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

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

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

Most of the discussion on amendment 181 has centred on the word “only”. Just to get clarification on this point, would someone with an eating disorder who was later diagnosed with a terminal illness still be able to access an assisted death, if that were required under the amendment?

[Stephen Kinnock]

My answer to that question is yes. My understanding is that so long as the terminally ill, six-month criteria are met, that person would qualify for assistance under the Bill.

[Jack Abbott]

Just to be absolutely clear for everyone in the room, and in case I was not specific enough, if that terminal illness is a result of the eating disorder, rather than, say, of that person also being diagnosed with a terminal illness such as cancer, would they be covered under amendment 181?

[Stephen Kinnock]

My understanding is that amendment 181 is clear that the qualification for accessing assisted dying has to be based on the definitions in the main body of the Bill. If passed by the Committee, the amendment will make it clear that an eating disorder does not qualify for access to that service. There has to be another, clear definition that does qualify under the terms set out in the main body of the Bill.

--- Later in debate ---

[Naz Shah]

I thank my hon. Friend, and my hon. Friend the Member for Penistone and Stocksbridge, for making it clear that they would not vote for the amendment. I also thank the hon. Member for Harrogate and Knaresborough for bringing forward an amendment that discusses those issues. However, whether it is withdrawn or not, it is an amendment that we are debating and talking to.

The hon. Member for Harrogate and Knaresborough, who tabled the amendment, no doubt feels very strongly that the conditions of patients with neurodegenerative diseases make a case for relaxing the six-month prognosis to 12. There may well be a good case for doing so, but we can only consider the case for extending the prognosis to 12 months because of the challenges created by neurodegenerative diseases if we have first considered that extremely complex subject.

We cannot say that the Committee has studied the difficult subject of neurodegenerative diseases and how they would affect the administration of the Bill. We have not heard from witnesses on the subject, and we have not been able to ask them questions. We did solicit evidence on whether neurodegenerative diseases would affect the ability to self-administer lethal drugs, but we have not had time to study the written evidence.

I appreciate that the hon. Member for Harrogate and Knaresborough is not going to press the amendment to a Division, which leaves some of what I wrote earlier obsolete. I appreciate the hon. Member’s efforts. We are sent here by our constituents to represent them to the best of our ability. I certainly try to do that, and I know my hon. Friend the Member for Spen Valley always tries to do that—I have no doubt that the hon. Member for Harrogate and Knaresborough and all others are trying to do that. We vow to represent our constituents, and had the amendment gone to a Division I would not have been able to support it, simply because we cannot make those difficult decisions without being properly informed. We cannot make up our minds to change the Bill because of a complex set of diseases.

[Jack Abbott]

Just as a point of clarification, I remember asking one of the witnesses at our oral evidence sessions about this very issue—Sir Nicholas Mostyn, an esteemed judge who has written and spoken about the issue extensively. We asked his views about neurodegenerative diseases and extending the time to 12 months, so it was something that we were aware of and discussed as a Committee. In fairness to the hon. Member for Harrogate and Knaresborough, it has not come completely out of the blue.

[Naz Shah]

I agree that we did hear that, but we did not hear from experts in the Bill, and at that point it was not discussed. While I acknowledge my hon. Friend’s point that we did speak to Sir Nicholas Mostyn, we did not have further evidence, and this measure was not in the Bill when we took evidence from those witnesses.

--- Later in debate ---

[Danny Kruger]

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

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

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

[Jack Abbott]

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

[Danny Kruger]

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

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

Jack Abbott Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

We will not press amendment 49 to a vote, but I support the principle. Let us be clear what we are doing here: allowing people with learning disabilities to make unwise decisions and assuming capacity in all cases. Let us be honest about what we are doing if we proceed with clause 3 unamended.

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

Upcoming amendment 339 to clause 4 addresses that specific point. The hon. Gentleman has been asked this a number of times today, but would he be satisfied if that amendment was passed?

[Danny Kruger]

Sorry—remind me of the detail of the amendment.

[Jack Abbott]

Essentially, the amendment would require that if a person is autistic or has a learning disability, they must be given accessible information and sufficient time to consider it. Additionally, there must be at least either a supporter or an independent advocate there. That amendment was tabled by my hon. Friend the Member for Bexleyheath and Crayford and will be discussed later.

[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.

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

Jack Abbott Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Sojan Joseph]

I would be happy to see the Bill make a strong case that the people who will take part in this process have training before they do so.

My larger issue is around the independent doctors. Again, I will use some examples of how the Mental Health Act 1983 has been carried out in its current format. Those cases always use a section 12-approved doctor, who is a second doctor and they may not have had any kind of contact with the patients. We may or may not end up in that sort of similar situation. That is the point I was making earlier.

As the Royal College of Psychiatrists mentioned, capacity can change and decisions are opinions with margins of error. I mentioned my experience working in mental health wards earlier, and the hon. Member for East Wiltshire talked about the capacity assessments carried out when patients are standing by or threatening to jump off a bridge. I am not comparing these situations or saying that they are similar, but we have to make decisions based on capacity. In my experience of discharging people from hospital in a mental health unit, when somebody is threatening, “I’m going to kill myself if you discharge me”, the multi-disciplinary team—the doctors and the nurses—have to make a decision on whether to discharge the patient based on their capacity at that time.

Capacity is assessed based on whether someone is able to understand information—can they retain, use and weigh information, and can they communicate their decision? We cannot compare that with the situation of somebody asking for assisted dying. I want to make it clear that the capacity assessment is the key. I would love to support this amendment. As I said earlier, this issue was one reason I voted against the Bill on Second Reading, but passing this amendment might change my position and I would love to support it.

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

It is a pleasure to serve under your chairship, Mrs Harris. I will speak specifically to amendment 50. I fully appreciate and accept the points made on a number of occasions during this debate by my hon. Friend the Member for Stroud—that many proposed changes either already feature in the Bill or are the current course of practice for doctors and other medical professionals. As I have said previously, I am not generally in the business of supporting amendments that, in my view, overcomplicate issues, are ambiguous and could lead to other consequences or are simply repetitious, but I do not think that amendment 50 would do those things.

Some proposed amendments are featured in the Bill, either directly or implicitly, but I do not see how amendment 50 would overcomplicate or lead to ambiguity. It is a quite direct and, dare I say, common-sense ask that we should all support. I take the point made by the right hon. Member for North West Hampshire on proposed new subsection (2)(f) of clause 3, as inserted by amendment 50, though I confess I did not read it in the same way that he did. I read it as saying that anyone looking to go down this route should be made aware of the legal consequences. That is a sensible suggestion.

I do not expect a doctor would be going into people’s bank accounts or deeply understanding their legal affairs, but due consideration, advice and information should be imparted to the person who is applying. That is how I read it; I did not think it would be a hugely intrusive, in-depth study into a person’s personal finances.

[Kim Leadbeater]

Does my hon. Friend acknowledge that it could be a problem and an area of concern if we have two Members who have both read an amendment but have different interpretations of it?

[Jack Abbott]

Potentially. There are certain words and clauses on which everyone will come to very different conclusions. This has been the case throughout the entire Committee process, which is approaching its 16th sitting now. It has already been said that this provision could be tightened up, and I welcome the Ministers’ input in helping us to understand their position on aspects like this.

In my view, there is nothing in amendment 50 that specifically says, “This would be an intrusive look at someone’s personal finances.” The measure—on the advice that would have to be given—is a proportionate one. Yes, it could be reasonably argued that proposed new subsection (2)(c) to clause 3, as set out in amendment 50, has already been covered under things that we have discussed extensively, such as coercive control and pressure. Equally, I do not think that any of the language in the amendment would necessarily overrule any other issues or make them more ambiguous. From that point of view, I will be supporting the amendment. I do not think there is anything in it that would override or lead to complications with any other part of the Bill, but it does put in black and white on the face of the Bill some of the very basic processes that should be happening.

I appreciate that many of the points in amendment 50 are already happening or feature directly or implicitly in the Bill. However, I do not think there is any harm in the amendment; in fact, given the nature of what we are talking about and the fact that this legislation is unprecedented in this country, we should be very clear and direct. I do not think it will lead to confusion for our medical profession. These are straightforward and common-sense asks. On that basis, I will be supporting this amendment.

[Lewis Atkinson (Sunderland Central) (Lab)]

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

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

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

“The information you give patients

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

This will usually include:

a. diagnosis and prognosis

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

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

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

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

That is already set out by the General Medical Council.

--- Later in debate ---

[Jack Abbott]

I completely hear everything my hon. Friend is saying, but we also to have accept that this is not like any other legislation. This is arguably one of the most seismic societal changes that we, as parliamentarians, are going to be passing. In my view, amendment 50 would not set a precedent that, for all future health legislation, we have to set out the clear procedures—

[The Chair]

Ahem.

[Jack Abbott]

I apologise for the length of this intervention, Mrs Harris. The central point is that we have to recognise that this is an incredibly important piece of legislation and there is nothing wrong with being absolutely clear and stating the procedures that would have to be undertaken to pursue this.

[The Chair]

I do not need apologies; I need brevity. I do not want to repeat myself again.

--- Later in debate ---

[Jack Abbott]

My hon. Friend makes the case that some people will not be given the full range of medical options available to them. Presumably, though, the amendment would limit that even further, because they will not be able to understand assisted dying fully unless they have raised it themselves. We are actually restricting the full range of medical options for those people.

[Naz Shah]

That is not what I am trying to get to here. Maybe there is some confusion on my part; I will make it clear as I carry on. The issue is that people already know that assisted death is an option in the wider context, just like when we talk about abortion, as my hon. Friend the Member for Broxtowe pointed out earlier. I am supporting amendment 8 because it further safeguards people, as the practitioner cannot be the one to raise it. Perhaps if I continue with my speech, my hon. Friend the Member for Ipswich may find his answer. We can come back to it if necessary.

As I was saying, many people will be poorly informed on medical matters and reluctant to ask questions of doctors. Many will have capacity under the Mental Capacity Act but, as we have heard from my hon. Friend the Member for Bexleyheath and Crayford, they will have greater capacity to take some decisions than others. For all those people, there is a danger that if a doctor raises this subject first, they will hear it not as a neutral comment, but as a suggestion. Not all of them will hear it as such, but some will.

Although not all expert witnesses who appeared before us endorsed that view, it is a concern that some raised. Others took a different view, such as the British Medical Association, which wants doctors to be able to raise assisted dying. It gave several reasons in its written evidence:

“Doctors should be able to talk to patients about all reasonable and legally available options…Doctors should be trusted to use their professional judgement to decide when and if a discussion about assisted dying would be appropriate, taking their cue from the patient as they do on all other issues…A prohibition would also create uncertainty and legal risks for doctors, which may inhibit effective doctor/patient communication and understanding.”

We cannot simply adopt or reject the amendment because of what the experts say. Instead, we must go through the arguments that the different experts made and consider which we find most convincing. It is our responsibility as legislators to make this decision. Personally, I found the voices raising concerns to be deeply convincing.

As with all this Committee’s inquiries, we must look at everything from the angle of safeguarding those who are vulnerable across society. For example, if someone is isolated, with very few close relatives or friends, and if they feel that they cannot challenge what the doctors say to them, they will be deeply trusting of or even dependent on their own doctor. That is not to say that we should be cynical about doctors, who are giving vital support to our most vulnerable citizens; it is to say that we have to look at the reality.

There is one kind of relationship between a confident and socially well-supported person and their doctor. For some who may lack confidence and have little or no social support, that relationship may well be very different. That point was repeatedly stressed by senior doctors who gave evidence to the Committee. We heard from witnesses that they do not think that this is a hypothetical danger.

Let me remind hon. Members of some of the expert witnesses who told us about the real risks posed. Dr Rachel Clarke, a palliative medicine doctor at Oxford, said:

“If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, ‘Have you thought about assisted dying?’, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’ Autonomy is much more subtle and complicated than we assume from outside.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]

[Jack Abbott]

My hon. Friend makes a powerful point, but I would gently point out, as has been said already this afternoon, that the conversations between doctor and patient will not be that straightforward. A range of options will be presented to the patients. I do not think it would be a case of “Here is the option of assisted dying. This is your only option.” There will be a huge range of options on the table, as is right and proper.

[Naz Shah]

It is the right and proper thing to do to give options, but we are talking about vulnerability. We have had the debate a few times now about people with vulnerability, and we heard during evidence sessions about coercion, capacity and all the issues relating to amendment 8 in respect of those with vulnerabilities being presented the option of assisted death. When I speak to my next amendment, I will cover some of this, because the Bill does not necessarily leave us with confidence that vulnerable people will be safeguarded. That is what amendment 8 also seeks to address.

Dr Rachel Clarke is a doctor who spends every working day with people who need palliative care. Her evidence cannot be laid aside. Dr Jamilla Hussain, who also gave evidence, is in favour of assisted dying in principle, but she raised significant concerns about the Bill as drafted, including on this issue. Dr Hussain said that her patients in Bradford have reduced access to palliative care, partly because they fear that doctors might try to end their life. She talked about how she worked with

“not only ethnically diverse communities, but those who are socially disadvantaged…I have taken this Bill to them and they have made it really clear—this is not just one community, but several, and I am not speaking on my behalf, but on theirs—that they are really fearful because this is what happened to them in covid. It affected everyone, but it affected some communities disproportionately because our services are not equitable. That could profoundly affect their healthcare, and not only in terms of end-of-life care. They are saying, ‘We will not even come to hospital ourselves, because we are worried that this would happen.’ This is not an academic or theoretical risk. We saw it happen in covid in Bradford. There were communities so worried that their loved ones were dying in hospital that they stayed at home and died earlier.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 190, Q247.]

Perhaps in some cases they died a death that could have been preventable. Dr Hussain said that it is “not a theoretical risk.”

Dr Hussain also said:

“The risk for somewhere like Bradford, where we are doing okay—we have a long way to go—is that the Bill creates a fear in those communities. I have been going out and trying to build trust—being trustworthy—and they made it really clear to me by saying, ‘We trust you; we don’t trust the system. So if I came into hospital, even if your team was there, I would be really scared to access palliative care.’ In a system that is doing okay, we are now adding this new risk. We need to mitigate against that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q259.]

That is what we need to do. We need to listen to what the doctors who are treating vulnerable patients say about the risks to those people.

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

Jack Abbott Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Kim Leadbeater]

I rise to speak first to my amendments 185 and 186, which would make important changes to impose a duty on the Secretary of State to make regulations about the training, qualifications and experience required to act as the co-ordinating doctor, as the Minister says. Moving from “may” to “must” would make it a legal requirement that such training take place and would thereby strengthen the Bill. In its present form, the Bill gives the Secretary of State that power to make such regulations but does not legally require him or her to do so.

Amendment 186 would ensure that regulations must include training about

“(a) assessing capacity;

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

Colleagues will appreciate that it is difficult for me to resist the temptation to put the entire training manual in the Bill—we all want to show the thorough approach that has been taken—but doing so would not make for good, clear legislation and can be limited in terms of flexibility and future-proofing. However, given the importance of the matters of capacity and coercion, I felt that it was important that this level of detail be specified in the Bill, because those issues have been at the heart of so many of our deliberations on this hugely sensitive and important issue.

My hon. Friend the Member for Bexleyheath and Crayford, who tabled amendment (a) to my amendment 186, has made a compelling argument, as always. Like my hon. Friend the Member for Penistone and Stocksbridge, I have some concerns that the amendment would limit the number of disabled people who are covered and that it would not cover people with mental disorders, but I understand the concerns around autistic people and those with learning disabilities.

I am also mindful, given that people with Down’s syndrome will typically have some form of learning disability, that amendment (a) may help to address some of the concerns that were expressed yesterday about ensuring that the Bill meets their needs and takes them into consideration. I take on board the Minister’s comments about the Health and Care Act 2022, but I am minded to support the amendment and work with my hon. Friend the Member for Bexleyheath and Crayford and others as necessary to make any further changes as the Bill progresses.

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

I am grateful to my hon. Friend for supporting that amendment. We have often debated the level of detail that should be set out in the Bill. I fully appreciate that she does not want to include the whole training manual; I will not discuss my amendment, which concerns culture and trauma-informed care, because I recognise that it is much too detailed in that respect. However, does she agree that where possible, and where it does not create unintended consequences or loopholes, we should reassure not just colleagues across the House but members of the public, who want to see these sorts of thing on the face of the Bill?

[Kim Leadbeater]

My hon. Friend is absolutely right. If the Bill passes, it will be a huge change. We have a duty to the public to show that we are including sufficient detail in the Bill and to provide reassurance in any way we can. To be honest, I would quite like to put the entire training manual in the Bill, but I appreciate that from a legislative perspective that is not possible. However, there are occasions when, for the avoidance of doubt, we should make certain provisions clear on the face of the Bill.

That brings me to amendment 20, which was tabled by my hon. Friend the Member for Lowestoft, who has a huge amount of experience and expertise in the field to which it relates. Her amendment states:

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

At the moment, there are no safeguards for terminally ill victims of domestic abuse, financial abuse or coercive control. That concerns me, and it feeds into the points made by my hon. Friend the Member for Bradford West.

If a victim of domestic abuse or coercive control—it is often a woman, as we know—is also terminally ill, I can only imagine what a lonely place that is. At the moment, that person is under no supervision. Sadly, there have been instances in which those people have taken their own life. They will continue to be the victims of their incredibly difficult personal circumstances on top of having a terminal illness, which is an absolute tragedy. Opening up the conversation with doctors and healthcare professionals about their circumstances has to be a good thing. It will shed light and transparency on what must be an incredibly difficult situation.

--- Later in debate ---

On amendment 427, I think we covered the relevant points yesterday. As I have said, I am very open to continuing the conversations to ensure that the Welsh language is fully respected in the Bill.

[Jack Abbott]

On a point of order, Mr Dowd. I think my hon. Friend the Member for Spen Valley said that if amendment (a) and amendment 186 are agreed to, that will negate the need for amendment 340. I seek clarity on whether that is the case.

[The Chair]

It is not for me to make that decision.

--- Later in debate ---

[Danny Kruger]

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

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

[Jack Abbott]

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

[Danny Kruger]

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

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

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

Jack Abbott Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

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

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

[Danny Kruger]

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

[Jack Abbott]

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

[Danny Kruger]

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

--- Later in debate ---

[Kit Malthouse]

I rise briefly to oppose all four amendments, which seem to completely ignore the reality of what it is like to receive a terminal diagnosis and then die. In truth, from the moment someone is told that they have some horrible disease that is likely to kill them, their entire life becomes a contemplation or reflection on their mortality, frankly, and on the options that might be available to them. Although we have sought to strike a balance in the Bill by having periods of reflection between the various steps, we have to reflect on the fact that people will be thinking about these things all the time anyway. Although we might be going through the motions and hoping that they seek assistance and advice during that period, I guarantee that it will already be in the forefront of their minds.

These amendments—like so many from the hon. Lady from the beautiful city of York, the hon. Member for York Central—operate on the basis that people will show up at six months, enter the process at six months, do their three weeks of contemplation and then immediately take their lives, which is simply unrealistic and hardly ever going to happen. The vast majority of people will have been wrestling with their disease for months and often years before they get to the six-month period. If they are diagnosed with less than six months to go, which happens quite frequently, as we discussed in relation to pancreatic cancer yesterday, they will be immediately thinking not just about what their death will be like, but about the things they have to get done in that period—spending time with their family, the people they want to say goodbye to, the arrangements they want to make and the things they want to complete before they leave us. Imposing on people these arbitrary periods of reflection—the ones in the Bill are arbitrary, too—has to be balanced against the notion that these people have other things to do, and a hell of a lot more to think about than the bureaucracy we are trying to put in place.

The other thing to bear in mind, which the amendments do not take account of, is that disease progression is very rarely linear. I am sure the medics will tell us that there is often a period where a person thinks they are going to be okay, and then suddenly they fall off a cliff towards the end. Anybody who has been close to somebody with advanced cancer will know that they can be perfectly well and functioning until the last couple of weeks, or even days, before they suddenly decline and die. We need to design a system that satisfies the requirement for reflection, but also lets these people do what they need to do.

Although the hon. Member for Bradford West says that the amendments do not extend the amount of reflection time by that much, what in total they double it. It goes from 21 days to 42 days, which is a very significant proportion of the time that those people will have left to themselves—to sit, think, wait and go through the bureaucratic process. What most people will want to do is go through the process and secure permission, then take their time and think about what they want to do. They want to get on with their lives and to enjoy what is left because they lose the fear of what their ultimate end is going to be. Then, some weeks or months later, they can make the decision, if they wish to, to take their own lives, and we know that about a third do not because they are in palliative care.

[Jack Abbott]

On the point about almost doubling the time of the so-called reflection period, I think we have been very fixated on the Committee, and rightly so, on the six-month limit for the terminal diagnosis, but we recognise that for many people it will be much less than that. A reflection period of two months for someone with a terminal diagnosis of three months is a critical problem.

[Kit Malthouse]

I completely agree. We have to strike a balance here. The point I am making is that, within an envelope of six months, 42 days is far too long, so I am afraid that I flatly oppose the amendments. They are based on a fundamental misunderstanding: the idea that people will just show up at six months, that their disease progression will be linear, and that they will then take the decision immediately, the moment they finish the reflection period. I can tell hon. Members that the entire six months, from the moment someone gets a six-month diagnosis, will be a reflection period.

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

Jack Abbott Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

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

For clarity, at what point in the conversation does the hon. Member expect the question to be raised? In reference to an assessing doctor, do I take it that the question must be asked twice, at different times, by both the co-ordinating and the independent doctor?

[Rebecca Paul]

I thank the hon. Member for his very good questions. I suggest that it be asked twice, because it makes a lot of sense to ensure that the patient is given the chance to really explain what is driving their decision. It is the simplest of questions, but it is amazing what can sometimes come out of the simplest question.

I return to the safeguard against coercion. In a sense, this is not a new safeguard; rather, it confirms and bolsters the other safeguards in the Bill, which are there to explore the reasons for assisted dying. Asking why will help doctors to better understand what is driving a patient’s decision and to give that patient an opportunity to validate that they are truly eligible. It is the simplest of questions, driving the most significant conversation that a doctor and patient can have. I hope that hon. Members will support my amendment.

--- Later in debate ---

[Naz Shah]

I agree. Sometimes it will be the simple thing of asking the question as a human being—among all the conversations that are happening, just stopping and asking why.

[Jack Abbott]

I appreciate that my hon. Friend has given way a number of times, but I gently suggest that we already know the crux of the Bill and what we are debating. The “why” is that people with a terminal diagnosis, with six months to live, would like a course of action to end their lives in a pain-free way and to have the autonomy to do so.

We are in danger of over-legislating for a range of different permutations that could potentially happen in conversations. I agree that these kinds of questions are absolutely crucial, but it may satisfy my hon. Friend that amendment 21, to which we agreed a few moments ago, requires medical practitioners to take training on

“domestic abuse, including coercive control and financial abuse”.

That sort of protection and safeguard has already been agreed to.

We will rely on highly specialised individuals to pick up on these issues. They may want to explore, through further questioning, why people are making these decisions but we cannot legislate for all the different sorts of conversations, and all the emotions that may be going through people’s minds. If someone comes back and says, as my hon. Friend put it, “Well, it’s none of your business,” or whatever the answer may be, we will rely on the specialised professionals to pick up on danger signs. However, that would not necessarily lead them in every single conversation to have a suspicion of the patient’s motives. Life and conversation do not work like that and we cannot legislate in that way.

[Naz Shah]

I absolutely agree that life does not work like that. Life is very complicated and that is why I want the conversation to happen. My hon. Friend referred to amendment 21, which we have just agreed to. I spoke extensively about why that is a brilliant amendment that moves us towards much more safeguarding, but I also think that it does not go far enough for women, marginalised communities and people from ethnic minority backgrounds. I genuinely do not feel that amendment 468 is about over-legislating. It is just stating an obvious fact: sometimes, even in normal life, we go around the houses to get to a conversation and get to the right point. That is what I want to get to.

[Jack Abbott]

To follow up on the example my hon. Friend gave earlier, if—to be glib—someone said, “None of your business”, she would want the doctor to keep probing. At what point does that end? If someone genuinely does not want to have that conversation and says, “I want to end my life because I have a terminal diagnosis. I live in fear of the pain that could await me and I don’t really want to go into much detail,” where does that end? Where does that conversation continue to?

[Naz Shah]

My hon. Friend makes my case for me. If that person says, “It’s none of your business, but I have so much pain,” at that point, automatically, as we naturally do as human beings—

[Jack Abbott]

But this is a pure example.

[Naz Shah]

That example is a good example that strengthens my position.

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

Jack Abbott Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Danny Kruger]

I am afraid to say that the whole debate about assisted dying is replete with scare stories. The hon. Gentleman says that they are descriptions of horrible events, but that is the situation that we are dealing with. We are here to try to pass legislation that is designed to avert horrible deaths. I am absolutely committed to that as well, but the evidence from abroad shows that people can also have a horrible death with assisted dying.

The hon. Gentleman points to Australia, but the evidence from Western Australia in particular is that over 4% of assisted deaths reported complications. He might be right that it is a better regime than that used in the United States, but even there complications occur. We do not know yet what the regime will be here, but I am alerting the Committee to the genuine danger of an assisted dying regime that induces very unpleasant results for patients.

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

The hon. Member may be surprised to hear that I am inclined to support his amendment 362 and amendment 142 tabled by my hon. Friend the Member for Broxtowe, not because of, in the words of my hon. Friend the Member for Stroud, the scare stories or the examples that the hon. Member has been giving, but predominantly because of what the amendment says on the tin: that a person must be given a full explanation of the risks of complications and how a substance should be administered. As I have said a number of times in Committee—

[The Chair]

Order. Can I just check that this is an intervention?

[Jack Abbott]

It is an intervention, Ms McVey. My plea to the hon. Member is to focus on exactly what the amendment states. I appreciate all the stories and examples that he wishes to make, but it is important to reflect on the words of the amendment. As I said, I am minded to support it.

[Danny Kruger]

I am grateful to the hon. Member for his intervention.

Amendment 306, tabled by the hon. Member for York Central, addresses the question of what to do in the event of complications. I recognise that clause 9 states that that must be discussed, which I welcome. I think, though, that there is a significant absence that this amendment would address, which is what to do in the event of complications—specifically, which intervention would be appropriate.

Here we get into a very difficult area. I personally find it difficult to understand a way out of it, because it is a consequence of the sort of legislation that we are considering: what do we do when complications arise? Specifically, what do we do when the patient does not die and is still alive some hours later, possibly in distress? I have cited evidence about some of the complications that occur and the prevalence—for example, that 10% of such people in Oregon experience complications, including some who simply wake up again. We need to resolve this. On explaining possible side effects and complications, under the Bill as it stands none of the declarations that are signed by the doctors or the person requesting assistance confirm in writing that the criterion has been met for proper communication, so that is one concern.

My more substantial concern—I will finish with this—is that at the moment the doctors have to explain the complications, even though we do not know what the drugs are going to be yet, but they cannot discuss or decide with the patient what they would do in the event of complications. We know that the doctor must be present at the end or in the next room, but can they halt the process if complications arise—if the patient wakes up or is exhibiting signs of distress? That would be against the last known wishes of the patient who had said that they wanted to go ahead with the death. Should the doctor expedite the death knowing that that is what the patient theoretically wanted? Of course not, because that would be euthanasia; it would be the doctor actually killing the patient, which is illegal under the Bill. Do they stand by and do nothing at all, which goes against the doctor’s obligations to address symptoms and illness in a patient? If the patient is fitting or vomiting, the doctor would normally clear their airways. Should they do that, knowing that that might bring the patient back to life—that it might resuscitate them and stop the assisted death?

When we debate clause 18, we will discuss the process of the assistance that the doctor gives, but we are obliged, when we come to debate the Bill fully, to choose between three options. We could allow complications without any guidance, which is what the Bill does; that raises all sorts of challenges, and practical and ethical concerns, for doctors. We could stipulate that the patient should be revived, perhaps if a certain degree of distress is witnessed or if the patient is still alive after a certain period of time. Finally, we could allow euthanasia and say that, in that event, the doctor should be authorised to expedite the death. I do not know what the option should be. That is a question that a doctor would have to face in reality, in the bedroom of a patient who is exhibiting complications. I do not know what to do, but I do not think we should be proceeding with this Bill. Those who do believe in it have to answer this question: what does a doctor do if a patient is exhibiting distress and not dying—do they bring them back to life, expedite their death or do nothing?

--- Later in debate ---

[Naz Shah]

Yes, fortunately not. I am not convinced that the clause covers it. I will go back to that, but I have just read it because the hon. Member for Solihull West and Shirley raised it and I support his amendment, and somebody else raised it earlier.

I am not convinced that the complications are covered, because the clause does not set it out. In the usual sense, complications are side effects from medications. We have research and literature given to us and we understand the potential side effects. In this instance, we do not have a yardstick. I do not know whether the Minister can speak about the Government’s intentions—it would be helpful to have an impact assessment—and whether any research has been done in this area.

I am not convinced that clause 9(2)(c) actually covers this point, and I think the amendment would make the Bill much stronger. Ultimately, these drugs have not been tested—and for a very good reason, because they lead to death. We are in unchartered territory. When we are doing things that we have not done before, we cannot just pick and choose what we apply an analogy to. We need to be careful. We really need to consider the options to make this clause in particular much stronger.

[Jack Abbott]

I completely understand what my hon. Friend is saying about what may need to happen in respect of medical intervention, but I gently point out that the amendment would not cover that. It does not spell out in any way, shape or form what a medical intervention would look like. It says that there needs to be a random discussion, but it does not lay out any sense of the medical intervention. I do not see how the amendment will do what my hon. Friend is looking for.

[Naz Shah]

I thank my hon. Friend for his intervention. As drafted, the Bill does not include effects. All it says is “complications”. It does not include the potential effects of the drugs that will be used. That is how the amendment would strengthen the Bill.

--- Later in debate ---

[Dr Opher]

No, I have not, because that is currently illegal—this Committee is about changing that—but I have sat with patients who have slowly died. It is not about whether we get an ambulance; we know we do not do that. We are allowing the patient to die, and if something happens that involves having to help them, we just do it. We do not need to specify that in the Bill: it is part of normal medical practice.

[Jack Abbott]

I will be brief, as I have already alluded to my support. I put on the record my support for amendment 93. There has not been a lot of debate on it because it is a fairly straightforward proposal.

There has been a lot of discussion. Members on both sides of the Committee have spoken in defence of the medical profession in respect of huge parts of the Bill, although they should not have to. We have of course seen occasional bad practice, as we do in all professions, but we should take a moment to reflect on the dedication, diligence, hard work and expertise of medical professionals in everything they do. This debate has on occasion almost presented this as a 50:50 choice between good doctors and bad doctors. I think we would all agree that although we want to put in the right safeguards, that is not the case at all.

I have made this point a number of times, but I do not want to accept amendments that spell out all the rules and regulations so that every doctor has to go to the nth degree all the time. As my hon. Friend the Member for Stroud has said eloquently on a number of occasions, it is already in their codes of conduct, working practice, training and everything else. However, on occasion we cannot be satisfied that something is a given. For that reason, particularly in respect of amendments 142, 362 and perhaps 305, if we say that

“the nature of the substance that might be provided to assist the person to end their own life (including how it will bring about death)”

must be discussed, it is not a huge leap to say that we should also spell out how it may be administered and the possible risks and complications that come with that. As I have said, I do not think it will create any unintended consequences. I do not think it puts the full rulebook on the face of the Bill. If we are stipulating how it will bring about the death, it is not a huge leap to also talk about the other side effects.

Cutting through some of the stories, and everything else we have heard this afternoon, we should be considering what the amendments seek to do—what they say on the tin, as it were. We should be asking doctors to have the conversations, although I am absolutely sure that, as my hon. Friend the Member for Stroud said, those conversations will happen naturally anyway. I do not think there is anything harmful in the particular amendments, as we have discussed today.

Finally, on amendment 306, I understand the points that my hon. Friend the Member for Bradford West and the hon. Member for East Wiltshire made. To be totally honest, I fail to see how the amendment satisfies the arguments they were trying to make, as powerful as those arguments are. It does not solve the issue they are looking to solve; I do not think it answers any of those questions. For that reason, I will not support amendment 306, but I am minded to support the other amendments in the group.

[Stephen Kinnock]

Amendment 93 relates to the discussion during the assessment that the co-ordinating doctor and the independent doctor are required to have with the person. The amendment would require that each of those doctors, during their assessment, must discuss the nature of the substance that “is to be provided” to the patient to end their life, rather than the substance that “might be provided”.

On amendment 305, clinicians in all areas are expected to work with patients to make decisions about their care and treatment as part of a shared decision-making process, including by discussing the risks, benefits and possible consequences of different options. The Committee may wish to note that the GMC’s “Good medical practice” states that when discussing a patient’s condition doctors must discuss with patients

“the potential benefits, risks of harm, uncertainties about, and likelihood of success for each option.”

--- Later in debate ---

[Naz Shah]

I absolutely agree that we have not thought this through enough, because that process has not been laid out. We really need to think about these potential eventualities.

When such cases happen, the public, including family members of the person who has died, will rightly demand answers, and so will the media. They will want to know who the panel members were and why they made the judgment they did. In such cases, who would investigate whether panel members had got it wrong? The commissioner who had appointed them? The commissioner, or any person, no matter how honest and how learned, would come back to that question with a very strong bias. The commissioner will mark their own homework. That is not a system that anyone can argue will provide proper safeguards.

Hon. Members might object that the voluntary assisted dying commissioner will be a very senior judge. According to the new clause, the commissioner

“must hold or have held office as a judge of—

the Supreme Court

the Court of Appeal, or

the High Court.”

I agree that only people of high intelligence and good standing become judges in those courts, but that does not mean that the very highest judges in the land do not sometimes make mistakes—sometimes very bad ones.

[Jack Abbott]

If we follow that argument, does that mean that we would support the new clauses? If we are moving from that single point of reference—a High Court judge and judicial review—it is surely much safer to move to what is proposed.

[Naz Shah]

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

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

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

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

--- Later in debate ---

[Jack Abbott]

My hon. Friend is saying that there is no mechanism to remove the voluntary assisted dying commissioner. Actually, paragraph 4(5) of new schedule 1 says:

“The Secretary of State may by notice in writing remove a person from the office of Commissioner or Deputy Commissioner if satisfied that the person—

(a) has behaved in a way that is not compatible with their continuing in office”—

I think that addresses a lot of the concerns that she has been expressing—

“or

(b) is unfit, unable or unwilling to properly discharge their functions.”

There is a mechanism in the new schedule that would give the Secretary of State the power to remove the commissioner.

[Naz Shah]

I thank my hon. Friend for pointing that out, and I will look at it, but that was not my understanding.

There are multiple reasons to oppose new clause 21. With it, the Bill will reduce the impartiality that would have been provided by having a High Court judge rule on applications. It will increase the risk that a large number of decisions are taken by people who are enthusiastic proponents of assisted dying, which will reduce patient safety. It will also create a powerful new commissioner, who will appoint panel members and will then rule on whether they have made the right decision. That same commissioner will also be able to decide whether to overturn a panel’s decision to reject an assisted death application. That is a huge amount of power to put in one person’s hands and we should not do so. I urge hon. Members to reject the new clause.

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

Jack Abbott Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Daniel Francis]

I hear what the hon. Member says. My concern has always been the scenario that I described. If this legislation is passed and we push it forward, one death that occurs where somebody has concerns about the process would be one too many. I said that clearly when we debated clause 3, and that remains my principal concern. It is not necessarily about two sides, but in cases where there are concerns, we need to do everything we can to ensure that that does not happen.

I have a query about the resourcing of the panel. Part of the reason why we ended up here was the queries about the resourcing of the judicial role in the process. We would need to find skilled professionals, especially consultant psychiatrists and social workers, to sit on the panel. If we look at the per capita rates in the Australian and American states that have assisted dying, we can estimate that the number of cases of assisted dying each year in England and Wales would be in the low thousands. Any consultant psychiatrist or senior social worker who sits on these panels will have to spend hours on each case. We do not yet know how many hours it would be on average, but for complicated cases, it could be many hours. What analysis has been undertaken of the capacity of consultant psychiatrists and senior social workers? Their professional bodies are beginning to look at that, but again, we were not able to ask them that during oral evidence, and because the written evidence was submitted so heavily in advance of these amendments and new clauses being tabled, we do not have that information in front of us.

We hear about the resourcing of our NHS mental health services and the fact that we do not have enough psychiatrists, so I query whether we have enough senior social workers. A senior social worker visits my house every year, but I have never seen the same social worker twice, because of the turnover issues, capacity issues and the lack of staff.

What will the Government do to ensure that the panels fulfil their responsibilities? We would be dealing with applicants who have very little time left, and being able to properly staff the panels must be a priority. We must not take psychiatrists and social workers away from their other work, while ensuring that people seeking an assisted death do not wait a long time. That is another matter on which we would have benefited from oral evidence from expert witnesses. We would also have benefited from the normal consultation that there would have been on a Government Bill, because we would have been looking at that matter for several months.

In summary, I accept that this set of new clauses and amendments is an effort to fix problems with the Bill, but problems remain, and there are probably some new ones as well. I will therefore not support a number of the provisions.

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

It is a pleasure to serve under your chairship, Sir Roger. I rise to speak to several new clauses and to amendment (e) to new clause 21.

There were many comments yesterday about the fact that a number of Members across the House had cited the judicial stage as an important reason why they supported the Bill. I challenge the notion that they voted for it exclusively for that reason, but I recognise the strength of feeling. To be frank, I was not one of them. I was not persuaded, not least because of a number of points made yesterday by my hon. Friend the Member for Rother Valley, that the judicial stage would be anything other than a rubber-stamping exercise. I am certainly not going to go into “good judge, bad judge”. I hugely respect the legal profession, of which there are many representatives present.

The legal profession has a huge range of expertise and experience, but it could not be expected to cover in depth the psychiatric and social care aspects of the process, about which we have being raising concerns for weeks. For that reason, and especially given that we are retaining legal experience on the panel alongside social workers and psychiatrists—a triple-threat approach, as it were—I fail to see how anyone could reasonably argue that this approach is weaker. In my eyes, it is much stronger.

Of course, some people will always say that it does not go far enough; we have heard that several times. As has been acknowledged, we will never convince everybody that an amendment is safe or good enough. An uncomfortable truth that is rarely recognised but is worth mentioning—I am sure that I will shortly be misrepresented on social media for saying it—is that no safeguard that we could put in any Bill, on any subject, will 100% ensure that there will never be any mistakes.

We have to do our level best to ensure that the probability is reduced to an absolute minimum. However, when someone goes into surgery, there may always be complications that cannot be foreseen, and we know that there have been awful miscarriages of justice; as a new Government, we have spoken about them, from the Post Office scandal to infected blood. We also have to rely on the fact that we are entrusting experienced, trained professionals with carrying out this work. Not only more often than not, but in nearly every situation, bar the awful cases of which we are all aware, they do their work to the best of their ability, and we have to be absolutely honest about that.

We should not look at the new clauses in isolation. They are part of a package. A number of amendments have been agreed to, about coercion and about ensuring that medical professionals are trained to the right standard. Like my hon. Friend, I hope we will see further amendments on special educational needs and learning disabilities. Those things are really important, so it is worth recognising that in addition to the new clauses, which in my view ensure a much stronger approach to the final judgment, we have agreed to a number of other amendments.

I want to pick up the issue of whether the process should be adversarial or inquisitive. I am sure that hon. Friends who have served at the Bar will tell me if I am wrong, but in my view an adversarial process is one of competition: it pits someone trying to prosecute an argument against someone trying to defend it. In contrast, an inquisitive approach is about asserting the truth. In my view, people who are not only going through agonising pain but making agonising decisions about what to do with the remaining days of their life should not be on trial. We should approach them from a position not of suspicion, but of support. Of course, that is caveated by all the things we have talked about, particularly on things like coercion. If there is any idea that a person has been coerced into the decision, of course we should investigate that, but the process should not be adversarial.

The connecting element is that we should ensure that we get the balance right between safeguards and safety. We should not add so many barriers and layers that a person can never access the process because it is too cumbersome. I do not want people to spend the remaining days of their life sitting in endless meetings, consultations and an adversarial court process, or whatever it might be. But we absolutely have to have all the right safeguards: as we have said, if there is any suspicion that someone may have been coerced or does not have mental capacity, of course we should go down the relevant routes to ensure that that is not the case.

Part of the reason why people will make the decision is that they want the autonomy to go out on their own terms, plan their remaining months and enjoy experiences with their family. We must ensure that those precious days are spent with their family, not in endless meeting rooms, so we absolutely have to get the balance right. As has been acknowledged, the diagnosis is a really important part of it. We regularly talk about the six-month point in the diagnosis, but we know when many people receive their diagnosis, their final days will be much shorter, so in the main people do not have time to go through a lengthy, difficult process.

[Danny Kruger]

Is the hon. Gentleman not making a case against a third stage altogether?

[Jack Abbott]

No.

[Danny Kruger]

I would be grateful if the hon. Gentleman could explain that. If his concern is about asking patients to go through a third stage, after the doctor’s assessment—

[Jack Abbott]

indicated dissent.

[Danny Kruger]

In that case, what is the difference? It is not necessarily the case that the judicial stage has to be incredibly time-consuming, onerous or distressing for the patient. It is about the legitimacy of the process and the rigour that is applied to it. If the hon. Gentleman wants people to be sped through the process without going through the distress of further explanations, surely he should be objecting to the panel too.

[Jack Abbott]

I thank the hon. Gentleman for that question, but he is entirely misrepresenting my position. I have said that there should be a balance between safeguarding and ensuring that the process works for people. I have just spoken in support of the panel stage, and I think it is important that it is robust. We are including social care workers and psychiatrists alongside legal professionals. I have not for a moment used any language that suggests that I am not in favour of that. I am talking about the idea that it does not go far enough. We have spoken a number of times about adding additional layers beyond the processes that are already in the Bill, which we are debating today.

[Danny Kruger]

I was not suggesting that the hon. Gentleman opposed the panel. I recognise that he is speaking in support of it. My concern was that he was suggesting that there was a problem with the High Court stage. I now appreciate that he is objecting to some sort of fourth stage that some people might be suggesting on top of the panel. I personally am not proposing that; I think that there should be a multidisciplinary team as part of the assessment process and then a judicial stage, as originally planned.

[Jack Abbott]

In case I was not clear enough about my misgivings about the judicial stage, I will set them out again. In my view, the people making a High Court judgment probably do not have the breadth of knowledge and experience to pick up a number of the things that we have debated over the past few weeks. One cannot expect legal professionals also to be experts in palliative care, psychiatry or whatever it might be. I was saying that I had misgivings for that reason and that the approach that the panel is taking is more broadly in line with some of the Committee’s misgivings. It is an enormous improvement. I was not saying that we should remove that stage, dilute it or anything else. In fact, I am saying that it is much more robust and that it puts in the right safeguards, while getting the balance between safety and a recognition that people do not want to spend the last days of their life in perpetual meetings.

We have spoken about coercion a number of times. It is an incredibly powerful and important argument. I am sure my comments will be misrepresented, but we have to be clear that in some abusive relationships—which are pernicious, evil and subtle, as an hon. Member has mentioned on a number of occasions—someone might encourage their partner, or whoever it might be, not to go through with assisted dying so as to extend their days in pain and agony. We have to recognise that abuse takes many forms and is endemic in our wider society. That goes back to my point about why it is important to have a wider range of expertise on the panel. It is crucial to have psychiatrists and experts in fields beyond law. It is important to look at new clause 21 not in isolation, but in parallel with other amendments that we have agreed to, such as amendment 21, which specifically refers to coercion, training and so on. It is incredibly important to look at it in the main.

Finally, I will talk broadly about the questions of capacity and burden. We have spoken about not being able to police discussions. I would not necessarily go that far; I recognise that the relationship between the assessing doctors and the patient in the immediate term should approach this in the right way. However, these conversations take many forms and can be articulated in many ways, beyond what we can legislate for.

We have talked about the question of burden. If I, as someone who has just received a terminal diagnosis, have said, “I don’t want to spend my remaining days in absolute agony and fear, and I don’t want my family to go through that either,” that should not preclude my going through the decision-making process. However, I appreciate the nuance and the difference between that and someone saying or hinting that the decision has been taken out of their hands.

Another reason could be depression. I am sorry to put this incredibly glibly, but if I got a terminal diagnosis, I would feel pretty depressed about it; I might also be clinically diagnosed as depressed. Some previous amendments were about whether my past medical history—let us say that I had suffered from depression a number of times in my life—should preclude me from going through with the process.

The argument about family and friends saying, “Actually, Jack has suffered from depression at two or three moments in his life—maybe he should not access this,” although I think I am making the right decision, is powerful. To a degree, we have to rely all the time on a doctor, psychiatrist or anyone else to use their good professional judgment as to whether a person’s depression or otherwise is impairing their fundamental judgment on going down this route. I do not think that we can ever legislate 100% for that. We have to trust and rely on good practice, while giving people the training, skills and safeguards that we need to go down this route.

There is particular interest in the role of the commissioner. It is fairly regular procedure to have individuals being ultimately held to account in their various guises across the board. If there were not that single point of reference, people would be equally upset that no one could ultimately be held accountable for the wider system. It would be the same if the High Court system were retained; people would quite rightly ask who is actually overseeing the process. As well as the commissioner, with safeguards, the people ultimately responsible would be the Prime Minister, the Secretary of State for Health and Social Care or the appropriate authorities.

One question that perhaps my hon. Friend the Member for Spen Valley can answer is what the role is for the commissioner in Wales. Would there be separate commissioners for England and for Wales, or would the Secretary of State appoint one commissioner for both jurisdictions?

Amendment (e) to new clause 21, tabled by my hon. Friend the Member for Filton and Bradley Stoke (Claire Hazelgrove), is on a similar theme to my amendments 414 and 415; I am grateful to my hon. Friend the Member for Spen Valley and the rest of the Committee for supporting them in order to ensure that there is an informed consent procedure in the Bill. The amendment seeks to ensure equity for everyone who otherwise meets the eligibility criteria and who wishes to request assistance as set out in the Bill.

The Bill makes provision that the eligibility panel

“may hear from and question, in person, the person who made the application for the declaration.”

It clarifies that

“‘in person’ includes by means of a live video link or a live audio link.’

That is sensible because, for a number of people, travelling to a specific venue simply would not be possible, owing to their medical condition. However, the challenge around equity arises because several terminal illnesses also mean that people face significant, prolonged and unplanned pain episodes. It may make appearing before a panel via a live link at a specific, booked time slot all but impossible for some people. It would unduly and unfairly delay or at least make more difficult their wish to request consideration for assistance while they are in pain. Further panel appointments may not be straightforward to arrange, because of the number of people who would need to attend. A similar pain episode may happen again. Pain is not plannable, as we all know.

I am sure that none of us in this room thinks that the unintended consequence of excluding people who suffer from such pain episodes is in keeping with the intention of the Bill. This simple but important amendment would ensure that there is provision, where necessary, for otherwise eligible adults to pre-record their answers to the questions set by the panel in advance.

[Kit Malthouse]

The amendment is very sensible, not least because there are some conditions in which people experience a very significant decline at the end. In a matter of days, they may lose the ability to speak, while retaining capacity, so the ability for people in a small number of cases to give pre-recorded answers is incredibly sensible.

[Jack Abbott]

I agree wholeheartedly. It is important to emphasise that this provision will apply only in a relatively small number of cases, but it is a very important one. It would be subject to clear guidance developed following the passage of the Bill, as with the schedules and other related items, and would be subject to the same safeguards as the live link provisions already included in the Bill. Essentially, it would provide equity of access to request assistance for all otherwise eligible adults, no matter the pain or any other specifics of their terminal condition. Nobody should have to wait longer because of the pain that they are in.

My hon. Friend the Member for Filton and Bradley Stoke has tabled the amendment based on her experience. A close family member of hers, who has a terminal illness, has been experiencing pain episodes that would make it impossible to plan to join a meeting with a panel at a specific time slot via a live link. To require her to do so would only increase stress and distress at what is already an incredibly difficult time for her and her family. If the Bill becomes law, it would not be right to exclude anyone eligible from being able to request assistance as a result to the impact of the terminal illness itself. I encourage Committee members to join me in supporting the amendment.

I appreciate that bandwidth has come up several times. I admit candidly that it was a small factor in my thinking when I voted on Second Reading. By “bandwidth”, I mean the bandwidth of the professionals we are asking to do this work. By and large, I think we have done very well to keep politics out of this room, which is extraordinary, given the length of time that we have spent in here. However, there were a couple of moments of candour from Opposition Members on the Committee when they expressed concerns about whether the NHS has the capacity—

[The Chair]

Order.

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

Jack Abbott Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[The Chair]

I remind the Committee that with this we are discussing the following:

Amendment 371, in clause 13, page 9, line 5, leave out paragraph (a) and insert—

“(a) a certificate of eligibility has been granted in respect of a person, and”.

This amendment is consequential on NC21.

Amendment 61, in clause 13, page 9, line 5, leave out from “the” to “has” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 372, in clause 13, page 9, line 12, leave out from third “the” to end of line 13 and insert

“certificate of eligibility was granted,”.

This amendment is consequential on NC21.

Amendment 62, in clause 13, page 9, line 13, leave out from “the” to “or” in line 14 and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 373, in clause 13, page 9, line 17, leave out “declaration was made” and insert “certificate was granted”.

This amendment is consequential on NC21.

Amendment 377, in clause 16, page 11, line 12, leave out paragraph (d) and insert—

“(d) a certificate of eligibility has been granted in respect of a person;

(da) a panel has refused to grant such a certificate;”.

This amendment is consequential on NC21.

Amendment 63, in clause 16, page 11, line 12, leave out “the” to “has” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 378, in clause 18, page 12, line 9, leave out paragraph (a) and insert—

“(a) a certificate of eligibility has been granted in respect of a person,”.

This amendment is consequential on NC21.

Amendment 64, in clause 18, page 12, line 9, leave out from “the” to “has” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 381, in clause 27, page 16, line 16, leave out sub-paragraph (iii) and insert—

“(iii) a certificate of eligibility,”.

This amendment is consequential on NC21.

Amendment 65, in clause 27, page 16, line 16, leave out from “the” to “under” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 388, in clause 34, page 20, line 40, leave out paragraph (c) and insert—

“(c) a panel has refused to grant a certificate of eligibility;”.

This amendment is consequential on NC21.

Amendment 66, in clause 34, page 20, line 40, leave out from “the” to “has” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 390, in clause 40, page 23, line 24, at end insert—

“‘certificate of eligibility’ has the same meaning as in section (Determination by panel of eligibility for assistance);”.

This amendment is consequential on NC21.

Amendment 391, in clause 40, page 23, line 24, at end insert—

“‘the Commissioner’ has the meaning given by section (Voluntary Assisted Dying Commissioner);”.

This amendment is consequential on NC14.

New clause 14—Voluntary Assisted Dying Commissioner—

“(1) There is to be a Voluntary Assisted Dying Commissioner.

(2) The Commissioner is to be appointed by the Prime Minister.

(3) The person appointed must hold or have held office as a judge of—

(a) the Supreme Court,

(b) the Court of Appeal, or

(c) the High Court.

(4) The Commissioner’s principal functions are—

(a) receiving documents made under this Act;

(b) making appointments to a list of persons eligible to sit on Assisted Dying Review Panels (see Schedule (Assisted Dying Review Panels));

(c) making arrangements in relation to such panels and referring cases to them (see section (Referral by Commissioner of case to multidisciplinary panel));

(d) determining applications for reconsideration of panel decisions under section (Reconsideration of panel decisions refusing certificate of eligibility);

(e) monitoring the operation of this Act and reporting annually on it (see section 34).

(5) In this Act “the Commissioner” means the Voluntary Assisted Dying Commissioner.

(6) Schedule (The Voluntary Assisted Dying Commissioner) makes provision about the Commissioner.”.

This new clause provides for there to be a Voluntary Assisted Dying Commissioner.

New clause 15—Referral by Commissioner of case to multidisciplinary panel—

“(1) This section applies where the Commissioner receives—

(a) a first declaration made by a person,

(b) a report about the first assessment of the person which contains a statement indicating that the coordinating doctor is satisfied as to all of the matters mentioned in section 7(2)(a) to (g), and

(c) a report about the second assessment of the person which contains a statement indicating that the independent doctor is satisfied as to all of the matters mentioned in section 8(2)(a) to (e).

(2) The Commissioner must, as soon as reasonably practicable, refer the person’s case to an Assisted Dying Review Panel for determination of the person’s eligibility to be provided with assistance under section 18.

(3) But where the Commissioner receives a notification that the first declaration has been cancelled—

(a) the Commissioner must not refer the person’s case to such a panel, and

(b) if the person’s case has already been so referred, the Commissioner must notify the panel of the cancellation.

(4) Schedule (Assisted Dying Review Panels) makes provision about Assisted Dying Review Panels.”

This new clause provides for the Voluntary Assisted Dying Commissioner to refer a person’s case to a multidisciplinary panel, to be called an Assisted Dying Review Panel.

New clause 17—Reconsideration of panel decisions refusing certificate of eligibility—

“(1) This section applies where—

(a) a person’s case is referred under section (Referral by Commissioner of case to multidisciplinary panel) to an Assisted Dying Review Panel (“the first panel”), and

(b) the first panel refuses to grant a certificate of eligibility in respect of the person.

(2) The person may apply to the Commissioner for their case to be reconsidered on the ground that the first panel’s decision—

(a) contains an error of law,

(b) is irrational, or

(c) is procedurally unfair.

(3) The Commissioner must consider an application without a hearing.

(4) On the application—

(a) if the Commissioner is satisfied that any of the grounds mentioned in subsection (2) applies, they must as soon as reasonably practicable refer the person’s case to a different Assisted Dying Review Panel for a fresh determination under section (Determination by panel of eligibility for assistance);

(b) in any other case, the Commissioner must dismiss the application.

(5) The Commissioner must give reasons, in writing, for their decision.

(6) The Commissioner must notify the following of the outcome of the application, and give them a document containing their reasons for their decision—

(a) the person who made the application;

(b) the coordinating doctor;

(c) any other person specified in regulations made by the Secretary of State.”

This new clause provides for certain decisions of Assisted Dying Review Panels to be referred to a different panel for reconsideration.

Amendment (a) to new clause 17, leave out subsections (1) to (3) and insert—

“(1) The person applying for assisted dying, their next of kin, any of their relatives (within the meaning of the Family Law Act 1996), the registered medical practitioners who are treating them and anyone who took part in proceedings before the panel or gave evidence to the panel may apply to the Commissioner for the Panel’s decision to be reconsidered.

(2) The Commissioner will allow the application for reconsideration if the Panel’s decision was—

(a) wrong, or

(b) unjust because of a serious procedural or other irregularity in the proceedings.

(3) The Commissioner may consider the application without a hearing if they consider it in the interests of justice to dispense with a hearing.”

New clause 21—Determination by panel of eligibility for assistance—

“(1) This section applies where a person’s case is referred under section (Referral by Commissioner of case to multidisciplinary panel) or (Reconsideration of panel decisions refusing certificate of eligibility) to an Assisted Dying Review Panel (“the panel”).

(2) The panel’s function is to determine whether it is satisfied of all of the following matters—

(a) that the requirements of sections 5 to 9 have been met in relation to—

(i) the first declaration,

(ii) the first assessment and the report under section 7 on that assessment, and

(iii) the second assessment and the report under section 8 on that assessment;

(b) that the person is terminally ill;

(c) that the person has capacity to make the decision to end their own life;

(d) that the person was aged 18 or over at the time the first declaration was made;

(e) that before making the first declaration, but when the person was aged 18 or over, a registered medical practitioner conducted a preliminary discussion with the person;

(f) that the person is ordinarily resident in England and Wales and has been so resident for at least 12 months ending with the date of the first declaration;

(g) that the person is registered as a patient with a general medical practice in England or Wales;

(h) that the person has a clear, settled and informed wish to end their own life;

(i) that the person made the first declaration voluntarily and was not coerced or pressured by any other person into making that declaration.

(3) Subject to the following and to Schedule (Assisted Dying Review Panels), the panel may adopt such procedure as it considers appropriate for the case.

(4) The panel—

(a) must hear from, and may question, the coordinating doctor or the independent doctor (and may hear from and question both);

(b) must (subject to subsection (5)) hear from, and may question, the person to whom the referral relates;

(c) in a case to which section 15 applies, may hear from and may question the person’s proxy;

(d) may hear from and may question any other person;

(e) may ask any person appearing to it to have relevant knowledge or experience to report to it on such matters relating to the person to whom the referral relates as it considers appropriate.

In paragraphs (a) to (c) the reference to hearing from or questioning a person is to hearing from them, or questioning them, in person or by live video or audio link.

(5) The duty under subsection (4)(b) to hear from the person to whom the referral relates does not apply if the panel is of the opinion that there are exceptional circumstances which justify not hearing from that person.

(6) The panel—

(a) must, if it is satisfied of all of the matters mentioned in subsection (2), grant a certificate to that effect (a “certificate of eligibility”);

(b) must refuse to do so in any other case.

(7) The panel must notify the following of its decision—

(a) the person to whom the referral relates;

(b) the coordinating doctor;

(c) the Commissioner;

(d) any other person specified in regulations made by the Secretary of State.

Where it grants a certificate of eligibility, it must give a copy of the certificate to each of these persons.

(8) If the panel is notified that the first declaration has been cancelled, it must cease to act in relation to the referral (and, in particular, it may not grant a certificate of eligibility).”

This new clause provides for a person’s eligibility to be provided with assistance under clause 18 to be determined by a multidisciplinary panel (instead of the High Court).

Amendment (d) to new clause 21, in subsection (4), leave out paragraphs (a) to (e) and insert—

“(a) must hear from, and must question, the coordinating doctor and the independent doctor;

(b) must (subject to subsection (5)) hear from, and must question, the person to whom the referral relates;

(c) in a case to which section 15 applies, must hear from and must question the person’s proxy;

(d) must consider hearing from and questioning—

(i) persons properly interested in the welfare of the person who made the application for the declaration and other persons they are close to; and

(ii) any other person who has provided treatment or care for the person being assessed in relation to that person’s terminal illness; and

(e) may hear from and may question any other person, including any person appearing to it to have relevant knowledge or experience to report to it on such matters relating to the person to whom the referral relates as it considers appropriate.”

Amendment (c) to new clause 21, in subsection (4), after paragraph (e) insert—

“(aa) if it considers that the matters mentioned in subsection 2(c), (h) or (i) are established on a balance of probabilities but still considers that there is a real risk that they are not satisfied, then the panel must stay its proceedings until such further inquiries it orders are made,”.

Amendment (e) to new clause 21, after subsection (4) insert—

“(4A) Where the panel considers it appropriate for medical reasons, it may make provision for the use of pre-recorded audio or video material for the purposes of subsection (4).”

Amendment (a) to new clause 21, in subsection (6)(a), after “satisfied” insert “beyond reasonable doubt”.

Amendment (b) to new clause 21, in subsection (6)(a), after “subsection (2)” insert

“unless it believes that there are particular circumstances which make it inappropriate for the person to be assisted to end their own life,”.

New clause 2—Tribunal authorisation—

“(1) Where—

(a) a person has made a first declaration under section 5 which has not been cancelled,

(b) the coordinating doctor has made the statement mentioned in section 7(3), and

(c) the independent doctor has made the statement mentioned in section 8(5), that person may apply to the First-tier Tribunal (“the Tribunal”) for a declaration that the requirements of this Act have been met in relation to the first declaration.

(2) On an application under this section, the Tribunal—

(a) must make the declaration if it is satisfied of all the matters listed in subsection (3), and

(b) in any other case, must refuse to make the declaration.

(3) The matters referred to in subsection (2)(a) are that—

(a) the requirements of sections 5 to 9 of this Act have been met in relation to the person who made the application,

(b) the person is terminally ill,

(c) the person has capacity to make the decision to end their own life,

(d) the person has relevant and available palliative care options available to them,

(e) the person is not liable to be detained under the Mental Health Act 1983,

(f) the person was aged 18 or over at the time the first declaration was made,

(g) the person is ordinarily resident in England and Wales and has been so resident for at least 12 months ending with the date of the first declaration,

(h) the person is registered as a patient with a general medical practice in England or Wales,

(i) the person has a clear, settled and informed wish to end their own life, and

(j) the person made the first declaration and the application under this section voluntarily and has not been coerced or pressured by any other person into making that declaration or application.

(4) The Tribunal—

(a) may hear from and question, in person, the person who made the application for the declaration;

(b) must hear from and may question, in person, the coordinating doctor or the independent doctor (or both);

(c) for the purposes of paragraph (b), may require the coordinating doctor or the independent doctor (or both) to appear before the tribunal.

(5) For the purposes of determining whether it is satisfied of the matters mentioned in subsection (3)(g) and (h), the Tribunal may also—

(a) hear from and question any other person;

(b) ask a person to report to the Tribunal on such matters relating to the person who has applied for the declaration as it considers appropriate.

(6) In considering an application under this section, the panel must consist of—

(a) a sitting judge,

(b) a medical practitioner, and

(c) a lay person.

(7) In subsection (4)—

(a) in paragraph (a), the reference to the person who made the application includes, in a case where the person’s first declaration was signed by a proxy under section 15, that proxy, and

(b) “in person” includes by means of a live video link or a live audio link.”

This new clause would replace the role of the High Court with the tribunal system.

New clause 3—Tribunals in Wales—

“(1) For the purposes of this Act, the First-tier Tribunal and the Upper Tribunal, in exercising functions under or arising from this Act in relation to Wales, are to be treated as devolved tribunals within the meaning of paragraph 9 of Schedule 7A to the Government of Wales Act 2006.

(2) The Welsh Ministers may by regulations make provision relating to the procedure to be followed by the First-tier Tribunal and the Upper Tribunal in exercising functions under this Act in relation to Wales.

(3) Statutory instruments containing regulations made under this section may not be made unless a draft of the instrument has been laid before and approved by resolution of Senedd Cymru.”

Amendment 67, in schedule 4, page 28, line 32, leave out from “The” to “has” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 68, in schedule 5, page 30, line 6, leave out from “the” to “made” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 69, in schedule 5, page 30, line 10, leave out from “the” to end of line and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

Amendment 70, in schedule 6, page 32, line 3, leave out from “of” to “declaration” and insert “First-tier Tribunal”.

This amendment is consequential on NC2 and NC3.

New schedule 1—The Voluntary Assisted Dying Commissioner—

“Status

1 (1) The Commissioner is to be a corporation sole.

(2) The Commissioner is not to be regarded as—

(a) the servant or agent of the Crown, or

(b) as enjoying any status, immunity or privilege of the Crown.

(3) The Commissioner’s property is not to be regarded as property of, or property held on behalf of, the Crown.

General powers

2 The Commissioner may do anything the Commissioner considers appropriate for the purposes of, or in connection with, the Commissioner’s functions.

Deputy Commissioner

3 (1) The Prime Minister must appoint a person to be the Deputy Voluntary Assisted Dying Commissioner (the “Deputy Commissioner”).

(2) The person appointed must hold or have held office as a judge of—

(a) the Supreme Court,

(b) the Court of Appeal, or

(c) the High Court.

(3) The Commissioner may delegate any of the Commissioner’s functions to the Deputy Commissioner, to the extent and on the terms that the Commissioner determines.

(4) The delegation of a function under sub-paragraph (3) does not prevent the Commissioner from exercising that function.

(5) The functions of the Commissioner are to be carried out by the Deputy Commissioner if—

(a) there is a vacancy in the office of the Commissioner, or

(b) the Commissioner is for any reason unable or unwilling to act.

Appointment and tenure of office

4 (1) A person holds and vacates office as the Commissioner or Deputy Commissioner in accordance with the terms and conditions of their appointment as determined by the Secretary of State, subject to the provisions of this paragraph.

(2) An appointment as the Commissioner or Deputy Commissioner is to be for a term not exceeding five years.

(3) A person may not be appointed as the Commissioner or Deputy Commissioner if a relevant appointment of them has been made on two occasions. “Relevant appointment” here means appointment as the Commissioner or Deputy Commissioner.

(4) The Commissioner or Deputy Commissioner may resign by giving written notice to the Secretary of State.

(5) The Secretary of State may by notice in writing remove a person from the office of Commissioner or Deputy Commissioner if satisfied that the person—

(a) has behaved in a way that is not compatible with their continuing in office, or

(b) is unfit, unable or unwilling to properly discharge their functions.

Remuneration

5 The Secretary of State may pay to, or in respect of, the person holding office as the Commissioner or Deputy Commissioner—

(a) remuneration;

(b) allowances;

(c) sums by way of or in respect of pensions.

Staff: appointed by Commissioner

6 (1) The Commissioner may appoint staff.

(2) Staff are to be appointed on terms and conditions determined by the Commissioner.

(3) The terms and conditions on which a member of staff is appointed may provide for the Commissioner to pay to or in respect of the member of staff—

(a) remuneration;

(b) allowances;

(c) sums by way of or in respect of pensions.

(4) In making appointments under this paragraph, the Commissioner must have regard to the principle of selection on merit on the basis of fair and open competition.

(5) The Employers’ Liability (Compulsory Insurance) Act 1969 does not require insurance to be effected by the Commissioner.

Staff: secondment to Commissioner

7 (1) The Commissioner may make arrangements for persons to be seconded to the Commissioner to serve as members of the Commissioner's staff.

(2) The arrangements may include provision for payments by the Commissioner to the person with whom the arrangements are made or directly to seconded staff (or both).

(3) A period of secondment to the Commissioner does not affect the continuity of a person's employment with the employer from whose service he or she is seconded.

Staff: general

8 (1) Before appointing staff under paragraph 6 or making arrangements under paragraph 7(1), the Commissioner must obtain the approval of the Secretary of State as to the Commissioner's policies on—

(a) the number of staff to be appointed or seconded;

(b) payments to be made to or in respect of staff;

(c) the terms and conditions on which staff are to be appointed or seconded.

(2) A function of the Commissioner may be carried out by any of the Commissioner's staff to the extent authorised by the Commissioner (but this is subject to sub-paragraph (3)).

(3) Sub-paragraph (2) does not apply in respect of—

(a) the Commissioner’s function under paragraph 2(1) of Schedule (Assisted Dying Review Panels) of making appointments to the list of persons eligible to be panel members;

(b) the Commissioner’s function of determining applications for reconsideration under section (Reconsideration of panel decisions refusing certificate of eligibility).

Financial and other assistance from the Secretary of State

9 (1) The Secretary of State may—

(a) make payments to the Commissioner of such amounts as the Secretary of State considers appropriate;

(b) give such financial assistance to the Commissioner as the Secretary of State considers appropriate.

(2) The Secretary of State may—

(a) provide staff in accordance with arrangements made by the Secretary of State and the Commissioner under paragraph 7;

(b) provide premises, facilities or other assistance to the Commissioner.

Accounts

10 (1) The Commissioner must—

(a) keep proper accounts and proper records in relation to them, and

(b) prepare a statement of accounts in respect of each financial year in the form specified by the Secretary of State.

(2) The Commissioner must send a copy of each statement of accounts to the Secretary of State and the Comptroller and Auditor General—

(a) before the end of August next following the end of the financial year to which the statement relates, or

(b) on or before such earlier date after the end of that year as the Treasury may direct.

(3) The Comptroller and Auditor General must—

(a) examine, certify and report on the statement of accounts, and

(b) send a copy of the certified statement and the report to the Secretary of State.

(4) The Secretary of State must lay before Parliament each document received under sub-paragraph (3)(b).

(5) In this paragraph, “financial year” means—

(a) the period beginning with the date on which the Commissioner is established and ending with the second 31 March following that date, and

(b) each successive period of 12 months.

Application of seal and proof of documents

11 (1) The application of the Commissioner's seal is to be authenticated by the signature of—

(a) the Commissioner, or

(b) a person who has been authorised by the Commissioner for that purpose (whether generally or specially).

(2) A document purporting to be duly executed under the Commissioner’s seal or signed on the Commissioner’s behalf —

(a) is to be received in evidence, and

(b) is to be treated as duly executed or signed in that way, unless the contrary is shown.

Public Records Act 1958

12 In Part 2 of the Table in paragraph 3 of the First Schedule to the Public Records Act 1958 (bodies whose records are public records), at the appropriate place insert “The Voluntary Assisted Dying Commissioner”.

House of Commons Disqualification Act 1975

13 In Part 3 of Schedule 1 to the House of Commons Disqualification Act 1975 (offices disqualifying person from membership of House of Commons), at the appropriate place insert—

“The Voluntary Assisted Dying Commissioner or the Deputy Voluntary Assisted Dying Commissioner.”

Freedom of Information Act 2000

14 In Part 6 of Schedule 1 to the Freedom of Information Act 2000 (public authorities for the purposes of the Act) , at the appropriate place insert—

“The Voluntary Assisted Dying Commissioner.”

Equality Act 2010

15 In Part 1 of Schedule 19 to the Equality Act 2010 (public authorities subject to public sector equality duty), at the end of the group of entries for bodies whose functions relate to health, social care and social security insert—

“The Voluntary Assisted Dying Commissioner.””

This new Schedule contains provision about the Voluntary Assisted Dying Commissioner and the Deputy Commissioner.

New schedule 2—Assisted Dying Review Panels—

“Introduction

1 In this Schedule—

(a) “referral” means a referral under section (Referral by Commissioner of case to multidisciplinary panel) or (Reconsideration of panel decisions refusing certificate of eligibility) (and similar references are to be construed accordingly);

(b) “panel” means an Assisted Dying Review Panel.

List of persons eligible to be panel members

2 (1) The Commissioner must make appointments to a list of persons eligible to sit as members of panels.

(2) A person may be appointed to the list only if—

(a) the person (a “legal member”)—

(i) holds or has held high judicial office,

(ii) is one of His Majesty’s Counsel, or

(iii) has (at any time) been requested to act as a judge of the Court of Appeal or the High Court by virtue of section 9(1) of the Senior Courts Act 1981,

(b) the person (a “psychiatrist member”) is—

(i) a registered medical practitioner,

(ii) a practising psychiatrist, and

(iii) registered in one of the psychiatry specialisms in the Specialist Register kept by the General Medical Council, or

(c) the person is registered as a social worker in a register maintained by Social Work England or Social Work Wales (a “social worker member”).

(3) In this paragraph “high judicial office” means office as—

(a) a judge of the Supreme Court,

(b) a judge of the Court of Appeal, or

(c) a judge or deputy judge of the High Court.

Tenure of persons appointed to list

3 (1) Subject to the provisions of this paragraph, persons on the list hold and vacate their appointments in accordance with the terms on which they are appointed.

(2) An appointment to the list is to be for a period not exceeding five years.

(3) A person who has held appointment to the list is eligible for re-appointment for one further period not exceeding five years.

Membership of panels

4 (1) The Commissioner must make arrangements for determining the membership of a panel.

(2) The arrangements must ensure that a panel consists of—

(a) a legal member,

(b) a psychiatrist member, and

(c) a social worker member.

Decisions of panels

5 (1) The legal member of a panel is to act as its chair.

(2) Decisions of a panel may be taken by a majority vote; but this is subject to sub-paragraph (3).

(3) The panel is to be treated as having decided to refuse to grant a certificate of eligibility if any member votes against a decision to grant such a certificate.

Panel sittings

6 (1) Panels are to determine referrals in public (but this is subject to sub-paragraph (2)).

(2) The chair of a panel may, at the request of the person to whom a referral relates, decide that the panel is to sit in private.

Staff and facilities

7 The Commissioner may make staff and other facilities available to panels.

Practice and procedure

8 (1) The Commissioner may give guidance about the practice and procedure of panels.

(2) Panels must have regard to any such guidance in the exercise of their functions.

Reasons

9 Panels must give reasons, in writing, for their decisions.

Money

10 The Commissioner may pay to or in respect of members of panels—

(a) remuneration;

(b) allowances;

(c) sums by way of or in respect of pensions.

House of Commons Disqualification Act 1975

11 In Part 3 of Schedule 1 to the House of Commons Disqualification Act 1975 (offices disqualifying persons from membership of House of Commons), at the appropriate place insert—

“Person on the list of those eligible for membership of an Assisted Dying Review Panel.””

This new Schedule contains provision about Assisted Dying Review Panels.

Amendment (c) to new schedule 2, in paragraph 4, after

“(c) a social worker member.”

insert—

“(3) The Commissioner must ensure that each member of a panel has had training in respect of domestic abuse, including coercive control and financial abuse.”

Amendment (a) to new schedule 2, in paragraph 4, after

“(c) a social worker member.”

insert—

“(3) Each member of a panel must have fluent proficiency in the Welsh language if services or functions in the Act are to be provided to an individual in Welsh.”

Amendment (b) to new schedule 2, in paragraph 8, leave out sub-paragraphs (1) and (2) and insert—

“(1) The Commissioner must give guidance about the practice and procedure of panels.

(2) Such guidance must prescribe a procedure which in relation to each application appoints a person nominated by the Official Solicitor to act as advocate to the panel.

(3) Panels must have regard to such guidance in the exercise of their functions.”

This amendment would require Assisted Dying Panels to follow an adversarial process to test the evidence by appointing an advocate to the panel.

I call Jack Abbott—you left us on a cliffhanger.

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

I feel huge responsibility for my “EastEnders”-style ending, Ms McVey. Unfortunately, my speech is not going to be as radical as some may have hoped.

I was discussing the bandwidth or capacity of the professionals involved in the process. We have been very good at leaving party politics at the door, but Opposition Members have mentioned the state of the NHS and the wider healthcare system on a couple of occasions. I could probably go further and mention the huge backlogs in the courts and wider criminal justice system. It is fair enough to consider the Bill in that wider context; I have considered that point deeply, as I know Members from across the Committee have.

We asked earlier whether there is capacity in the system to support the panels—that is, are there enough psychiatrists and social workers? However, it is inconsistent to then also say that we need more psychiatrists and social workers in other areas of the process. I am not sure that we can have it both ways. This is something to consider—the Committee has discussed it—but ultimately it is a matter for Members of the House.

The Committee is not here to debate whether the systems in place can deal with an assisted dying Bill. Whether or not assisted dying is introduced into our healthcare and judicial systems, it will not fundamentally change the challenges that the country faces in these areas. We are here to ensure that we present back to the House a Bill that has the safeguards and balances that I mentioned this morning, so that it can progress. I certainly would not want to produce anything that paralyses the system, but new clause 21 would not do so. In fact, in the long run, the panel approach would help the process along. For that reason, I am not sure that the capacity of professionals provides a valid argument against the panel—if anything, quite the reverse. As I said, that point really was not worthy of an “EastEnders” cliffhanger.

We have had positive murmurings and acknowledgments about amendment (e) to new clause 21. The panel approach represents a huge leap forward. I appreciate that Members in the room and across the House may say that the approach does not go far enough. I go back to my earlier point: for some Members, no amendment, change or safeguard will ever be enough for them to support the Bill. As a Committee, we have to come out with a strong, robust process that puts the patient first, and ensure that we are acting in their interests. We must make sure patients are safe and have the capacity to make these decisions, but I do not want any individual looking to go down this route to be stuck in endless meetings or courtrooms, when they should be spending time with their loved ones. I think this strikes the right balance between safeguarding—bringing in all of the professional expertise that we have been looking to do as a Committee—and making sure this process is fair and equitable. I urge Members to support amendment (e) to new clause 21, but I will also be supporting the new clauses today.

[Danny Kruger (East Wiltshire) (Con)]

On Second Reading on 29 November, the hon. Member for Spen Valley said:

“Under the Bill, any terminally ill person who wants to be considered for an assisted death would have to undertake a thorough and robust process involving two doctors and a High Court judge. No other jurisdiction in the world has those layers of safeguarding.”—[Official Report, 29 November 2024; Vol. 757, c. 1019.]

There can be no doubt that the High Court judge safeguard was presented to the House as globally exceptional, unusually thorough and robust, as compared to other jurisdictions. It was also a prominent feature of the public campaign around the Bill. We were told it was a Bill designed for exceptional circumstances, with robust safeguards—the High Court judge being the pre-eminent one. It was not a trivial detail; it was the centrepiece of a safeguarding regime arranged around a small number of vulnerable people. Over 60 Members of Parliament are on the record as saying that it was this safeguard that helped persuade them to vote in favour on Second Reading.

--- Later in debate ---

[Danny Kruger]

I am sorry; I did not intend to give that impression. That is not what I am suggesting. What I am saying is that we have seen the rejection of a series of amendments that would have restricted eligibility, or ensured that only certain people would be eligible: those for whom we all understand the reason for the case for assisted death. Whether our amendments related to the burden, the pain, or questions around capacity and coercion, our amendments would have restricted access to only the most desperate people.

On that basis, it would have been appropriate to have a High Court stage, because the High Court could have accommodated that lower demand. Given the opportunity that the Bill affords to a larger group of people to gain access to assisted death, it has become obvious—I presume, in the mind of Government and others—that there is insufficient capacity in the court system to accommodate the regime being instituted here.

I think the question of High Court capacity has been driven by the desire for a system that can cope with many thousands of deaths per year. I have seen ranges suggesting between 6,000 and 17,000 deaths per year. If Members have other calculations or estimates, I would be grateful to hear them. In fact, it would be good to know whether the Government have done any estimation of the numbers we are looking at.

It is not simply a case of averting those desperate cases of people who help their relatives to die by going to Switzerland or who assist them in committing suicide in other ways—we heard from Max Hill that only a handful of cases cross his desk every year. It is clearly the intention to greatly widen the scope beyond that desperate group. It is unclear what the overall number is, but my strong sense is that we are looking at many thousands, and for that reason, it has been decided that the High Court would not have the capacity to cope with this.

[Jack Abbott]

We go back to the inconsistency argument. On the one hand, we are saying that we must have more psychiatrists, social workers and palliative care experts in the process. This change is now being proposed, and the hon. Gentleman is using that as a reason to say that there is bad faith here and the sponsors of the Bill just want to widen the scope. I do not think he can have it both ways.

[Danny Kruger]

I am not suggesting bad faith here. I think there is a genuine view, and it might well come from the Government’s official advice, that the Bill, as drafted and as amended, will allow many thousands of people to gain access to assisted death every year. On that basis, we will need a system that can cope with them. The judiciary clearly communicated that it could not cope, and I understand why it would do so.

[Jack Abbott]

I appreciate that, but just this morning we heard from the hon. Member for Reigate that, because there are not enough psychiatrists and social workers, this panel is not workable either. Again, there is an inconsistency here. There is either enough capacity in the system or there is not—which is it?

[Danny Kruger]

I am sorry to disappoint the hon. Member, but I am afraid I am going to have it both ways. I think the Bill is profoundly flawed, particularly if large numbers of people will be going through this system. Whether they are going through a judicial system or a panel system, there will be huge capacity constraints on the professionals involved, and we have transferred that responsibility and that problem from the judiciary to psychiatry and social work—unless, of course, it is a rubber-stamp exercise, which I fear it might be, but even then, we are still involving psychiatrists and social workers in a rubber-stamp exercise.

[Jack Abbott]

But that demolishes the central argument that the hon. Gentleman is making. On the one hand, he says that we are expanding access, but on the other, he says that the panel system will not be able to expand it. If the motive of the promoter of the Bill was to expand the system to make more people eligible, the hon. Gentleman has just said that the constraints of the panel will mean that that does not happen anyway. He is conflating different things and being totally inconsistent.

[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.”

--- Later in debate ---

[Jack Abbott]

I do not want to make implications about what the hon. Gentleman might be saying, but am I correct that, with the adversarial position that he is supporting, a person coming to the end of their life, who had gone through this process, would essentially have to argue their case in front of a judge?

[Danny Kruger]

No, I do not think it is necessary for the applicant to come to court and present their case—that might be completely impossible or inappropriate—but a case does need to be made to the judge about why it should proceed, which is part of the original proposal. Indeed, that is what is proposed under the panel system as well: the case is made for whether it should go ahead.

My suggestion is that there needs to be representatives of the applicant—who may want to appear themselves—but there also needs to be somebody who is putting the other side of the story: “Maybe this isn’t the right thing to do. Has the judge considered these parts of the evidence, or this aspect of the report from the assessing doctors?” That would be an appropriate procedure, which is completely consistent with how these important decisions are taken in other aspects of our system.

[Jack Abbott]

There is a difference between an adversarial system and an inquisitorial system, which is what I believe is proposed for this panel. The panel would take not an adversarial but an inquisitive position. I do not think that is a million miles away from what the hon. Gentleman is saying, but there is a distinct difference. If he is arguing for the panel to take an adversarial position, that is very different from where the panel currently is.

[Danny Kruger]

Yes; it would be inappropriate to ask a panel to operate in an adversarial system. It would be inappropriate to ask a psychiatrist and a social worker to act as a judge. We need a proper court system, as we always do with other important decisions in which two sides make arguments. Let me try to explain. I agree that what is being proposed is an inquisitorial system through a panel, which is completely alien to the British common law model of making important decisions. That is what is being suggested, but I do not think it is appropriate.

I do not believe in assisted dying; I think it is the wrong thing to do. But if we were to do it, we should have a proper multidisciplinary team at the outset—I sort of feel that that is where we have got to through these debates, and if the debates had happened properly and prior to the Bill being drafted, something more like this system might have been proposed. Perhaps a doctor does the first declaration as proposed, but we then go into a proper multidisciplinary team, rather than just having the options to refer to psychiatrists if appropriate or to maybe consult palliative care specialists.

The involvement of all the appropriate specialists in assessing capacity and coercion, making clear the alternatives that the patient has, making a proper diagnosis, and hearing from family members—all the appropriate processes that should be followed in a case like this—should happen at the very beginning of the process. There is no need for a lawyer at that stage on the multidisciplinary team that we have created; it will be a proper combination of clinical and social work professionals. Their reports would then feed into the judicial process, which would be the second or third stage, if we have a doctor at the beginning. The judge would then hear arguments from, as it were, both sides. That need not be a distressing or time-consuming process, but it would be an appropriate one under British law to make decisions of life and death. That court would clearly hear arguments made by both sides.

--- Later in debate ---

[Jack Abbott]

My hon. Friend makes a really good point, especially on the issue of coercion. Amendments on coercion training have been agreed to. Does my hon. Friend think the court system as it stands can deal with his concern about coercion, or will the panel be more able to deal with that kind of concern?

[Sean Woodcock]

That is my next point—and it is a good question. As I said, the panel is done with the right intention and would improve the process in many ways. My view is similar to that of the hon. Member for East Wiltshire—it is possibly one aspect on which we are in agreement—in that I think it comes at the wrong part of the process. If it was earlier in the process, it would improve things. Court capacity is an issue, but I take the point made by the right hon. Member for North West Hampshire that if we want the courts to do it, they need to get on and do it.

I keep coming back to the issue of what we are asking the state to do. Implementing the wishes and autonomy of the patient is important, but we also need to take very seriously what we are asking the state to allow to be done in its name. There is also the crucial matter of public trust, the condition of the national health service and the issue of capacity in the courts. As my hon. Friend the Member for Ipswich touched on, there is considerable disquiet and concern about how robust this process is going to be. Even though I think having the panel at the start of the process would improve what was put to the House on Second Reading, having judicial oversight at the very end would provide reassurance to the vast swathes of the public who are concerned about this, as well as to Members.

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

Jack Abbott Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

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

I do not want to go over ground that we covered in the later hours of yesterday, but this is sort of the issue that my amendment 533 sought to resolve, albeit via regulations rather than in the Bill directly. I am sure that our colleagues on the Front Bench will be doing some thinking about it. As the hon. Member for East Wiltshire alluded to, in some situations the question of place—of where we will be able to carry out these procedures—is not black and white. I fully appreciate what my hon. Friend is saying, which is that if someone chooses to end their own life in their own home, they should be able to do so. In some cases, however, the Government will need to give further thought to the issue of place. I think that is really important.

[Lewis Atkinson]

In considering the offer of any health or care-related activity, the appropriateness and suitability of the place is always in people’s mind, and clearly that varies. As I mentioned yesterday, we already have a licensing regime under which the CQC specifically licenses places for particular activity. I think my hon. Friend is right, but this is a normal part of decision making in the provision of health services and I do not think we should try to constrain it in primary legislation. However, as I started by saying, I recognise that we must enshrine the rights of individual conscientious objectors, which I think the hon. Member for East Wiltshire is trying to do with amendment 480, and I hope that we can do that, through some route, with the Bill.

--- Later in debate ---

[Naz Shah]

I thank the hon. Member. What he said is really helpful.

I want to come back to the issue of opioids. As someone who suffers from chronic pain, my understanding is that I have a choice over whether I take opioids or other medication. So when people are allergic to opioids, they can potentially access other medication for pain relief.

[Jack Abbott]

A lot of the focus in the last few minutes has been about a care home having already made it clear that it does not support the process of assisted dying and the fact that anyone entering it would therefore know that. However, there is a clear scenario where some care homes might change their position over time. Someone may be in a care home for many years, but then the care home might change its position and say, “Actually, now we do not support assisted dying.” In that scenario, people would actually have gone into that setting thinking that it supported assisted dying.

Although I am sympathetic to the issue of place being made clear, it has real ramifications. Again, I do not think it is as black and white as saying, “This care home already had a set position.” Some care homes or other settings might change their position over time, even when residents are in situ for a long time. That is the big problem with this particular clause: the situation is not as straightforward as some Members have perhaps suggested today.

[Naz Shah]

My hon. Friend makes a very valid point: it is not straightforward. That is why people are tabling amendments and having this discussion—to iron this issue out and make sure we nail it, to make the process as safe as possible.

There are laws in our country that protect people’s religious views—for example, we have the Equality Act 2010—and those laws are there for a reason. Speaking to all the amendments, I would not want to see hospices not being funded because they take a certain position. Also, from an employer’s perspective—I appreciate the scenario that has been mentioned, and I will come back to it—they may be recruiting in accordance with their values. We are all in politics, and we all sign up to a particular view of politics. When we recruit our staff, we put on the application form, or other information, that we would like applicants to believe in our value system. That is not discriminating against somebody who has a different value system. That would be my response.

--- Later in debate ---

[Jack Abbott]

I appreciate that, but as my hon. Friend has said a number of times over the last few weeks, some of these things unfortunately do happen. As I am sure we all do, I have had casework involving people with guide dogs saying that they have been refused certain services, including taxis, even though that is a civil offence because they have a guide dog with them. We have said a number of times that there are flaws in every single system. I appreciate that we want to adopt a good-will attitude, and I am sure the vast majority of settings across the country will operate on that basis, but we know that, in certain circumstances, that is not always the case. That is why, if we put anything in the Bill, it needs to have real clarity and not unintended consequences.

[Naz Shah]

My hon. Friend is absolutely right that we need to clarify this.

To sum up, this comes back to some of the questions I have for the Minister, and I wonder whether he can answer some of them. I say that especially because the Committee has had lots of debates on amendments tabled by the Government via my hon. Friend the Member for Spen Valley giving the Secretary of State statutory duties. Perhaps the Secretary of State will be able to clarify this issue and make it watertight using regulations.

Have we had an assessment of what the impact would be on the provision of healthcare if assisted death were permitted in either a hospice or care home, and is the Minister happy to share that assessment with the Committee? For example, if palliative care specialists are saying, “X amount of people would no longer want to be involved, so there is a real risk of an exodus of specialists from hospices,” we need to know whether there has been an assessment of that. Perhaps the Government can help us to understand that real concern from palliative care specialists.

Given that the Minister mentioned his visit to a hospice this week, has he had any discussions with Care England care homes about allowing this process to happen in care homes themselves? How have the concerns of clinical staff about allowing an assisted death in their healthcare facility been assessed, and have those concerns been put to him? How many staff have indicated that they would need to leave the NHS, care providers or hospices if an assisted death were mandated on their premises?

Coming back to beliefs, there is also the element of charitable bodies. Have we spoken to the Charity Commission about the impact on those bodies if they were pressured by the Bill into changing their charitable aims? Would they be protected from providing assisted death because of their charitable aims?

For me, this debate has raised more questions than answers, and there is much more discussion to be had. I am happy to listen to the hon. Member for East Wiltshire, as I can then intervene and probe further.

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship this morning, Ms McVey, even though it is a little later than originally planned.

Amendment 480 is intended to extend the category of those protected from being obligated to participate in the provision of assisted dying under clause 23 from registered medical practitioners, registered nurses and registered pharmacists or pharmacy technicians to all individuals. The amendment also seeks to clarify what an individual can refuse to do under clause 23(1), by setting out a non-exhaustive list of activities under the Bill that an individual would not be obligated to participate in. The amendment also specifies that the ability not to participate in the provision of assisted dying does not override any duty to signpost someone to information about assisted dying; to perform clerical, secretarial or ancillary acts; or to perform life-saving acts or grave injury-saving acts.

The amendment would introduce significant legal uncertainty and may mean that a person who had opted in to providing services under the Bill could refuse to continue to do so or could use clause 23 as a justification not to perform their duties as described in the Bill. For example, they may use the amendment as justification for not checking eligibility criteria, discussing prognosis or palliative care options, or performing other requirements under the Bill.

Amendment 480 may also conflict with other provisions. It states:

“no individual is under any duty…to be involved, directly or indirectly, in the provision of assistance”,

in accordance with the Bill. That may, for example, mean that although doctors are required under the Bill to notify a cancellation, they would be allowed to refuse to do things under the Bill, even if they have opted in to providing assisted dying services. It is not clear which provision would take precedence, which could allow the doctor to decline to notify a cancellation, by arguing that they are relying on clause 23(1).

Amendment 483 is intended to extend

“the range of activities which medical practitioners and other healthcare providers are not under an obligation to provide to include activities closely related to the provision of assistance”

under clause 23(1).

Amendment 484 is intended to expand the protection from being subject to a detriment by an employer at clause 23(2), to include where a registered medical practitioner or health professional refuses to participate in activity closely related to the provision of assistance. The term,

“activity closely related to the provision of assistance”,

is not defined, and that could create uncertainty as to what types of activity it is intended to cover.

The Bill does not, as currently drafted, specify where the provision of assistance may or may not take place. Amendment 441 would prevent there being any obligation on a care home or hospice regulated by the Care Quality Commission or Care Inspectorate Wales to permit the provision of assistance to be carried out on their premises. The effect of the amendment may be to limit the places where assistance could be provided. It may thereby reduce access to an assisted death for those residing within a care home or hospice, if a care home or hospice did not wish to allow an assisted death to be provided on its premises. The amendment could preclude some people from accessing services under the Bill if they were near the end of life and leaving their usual place of residence was therefore impeded. It may result in inconsistent treatment for patients when seeking to access an assisted death. That could potentially engage a person’s rights under article 8 of the ECHR—the right to respect for private and family life.

Amendment 481 has two parts. The first aims to ensure that employees cannot participate in the assisted dying process in the course of their employment if their employer has chosen not to participate in assisted dying. The effect of the amendment could be to limit the places where assistance would be provided, and it may result in inconsistent treatment for patients when seeking to access an assisted death. That could engage a person’s rights under article 8 of the ECHR—the right to respect for private and family life.

The explanatory notes suggest that the second part of the amendment seeks to ensure that employers require employees to provide or not provide assisted dying under schedule 9 of the Equality Act 2010. That schedule enables an employer to specify that having a protected characteristic is a requirement of a job when having that characteristic is crucial to the post and a proportionate means of achieving a legitimate aim. The ability to specify occupational requirements is conferred by schedule 9 of the Equality Act, and reference to it in this amendment would not have any additional effect.

The purpose of new clause 22 is to provide that the owners or occupiers of a premises would not be obligated to permit the self-administration of an approved substance on their premises. This right to refuse would not extend to a person who has an interest in the land but who is not occupying or operating on those premises, such as a landlord. It is unclear if the term “premises” would apply to a residential property, care home or hospice. As a result, the amendment may mean that someone who is terminally ill and is residing in, for example, a care home or a hospice could be required to leave that care home or hospice in order to receive assistance under the Bill if the care home or hospice owner did not wish to allow assisted dying on their premises. That could engage a person’s rights under article 8 of the ECHR—the right to respect for private and family life.

[Jack Abbott]

Another example raised by the hon. Member for East Wiltshire was about hospitals under certain trusts—because of the word “premises”. In the Government’s view, would hospitals and other such facilities beyond hospices and care homes also be included within this new clause?

[Stephen Kinnock]

As I was saying, the scope of the term “premises” is unclear. Is it residential property, care home, hospice or indeed hospital? That is one of the challenges with the drafting of the amendment: the scope and definition of the term is not clear.

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

Jack Abbott Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

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

It is a pleasure to serve under your chairship, Mrs Harris. I was also not intending to speak, but I think there are two slightly different issues here. Prior to Second Reading, the Equality and Human Rights Commission produced a briefing paper on some of the issues that have been covered in amendment 500. It also gave oral evidence where it was not happy about some aspects of the Bill and about not having the equality impact assessment.

I hear what my hon. Friend the Member for Sunderland Central says, but the briefing that the EHRC produced—although I appreciate what the Equality Act says—did not talk about sexuality, for instance, but it did talk about many of the aspects that are in the amendment of the hon. Member for Richmond Park. In the oral evidence, Dan Scorer from Mencap particularly talked about the experience in covid—for example, someone was five times more likely to have a do not resuscitate order placed on them if they have a learning disability. There is wide evidence of that, as Members, and me in particular, were well aware before we heard that oral evidence.

As a councillor, I remember the experience of ethnic minority communities during that period. I used to represent a council ward with a high west African population. There were clear cultural issues around people’s experiences with the health service during that period, and whether they wanted to take up the vaccine. As the then leader of the opposition on my council, I had regular meetings about the different levels of uptake of health services among different communities.

Beyond new clause 8, tabled by my hon. Friend the Member for Spen Valley, which would require the Secretary of State to engage with the Equality and Human Rights Commission, there is a valuable reason for seeking to have that data and for ensuring that the assisted dying commissioner has that data. As I will talk about in debates on subsequent groupings, Dan Scorer from Mencap clearly asked about what happens if things go wrong for people with certain protected characteristics, and at what stage we will review that.

Some of us have legitimate concerns about the characteristics in the amendment tabled by hon. Member for Richmond Park, and about coercion, particularly of women. People have listened long and hard about where I am coming from on this issue, and unlike some other Committee members, I am not opposed to assisted dying per se. I have come to the position, however, that it is vital to try to capture the data on people with learning disabilities or for whom there is a judgment about their level of mental capacity, and that should be in the Bill. I therefore support the amendment.

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

It is a pleasure to serve under your chairmanship, Mrs Harris. I was not planning to speak on this group either, but the debate speaks to a number of the things that we have talked about in the past few weeks. I add the caveat that all hon. Members present acknowledge that the promoter of the Bill, my hon. Friend the Member for Spen Valley, has repeatedly made it clear that data collection is essential to what we are proposing. I am also sympathetic to what my hon. Friend the Member for Sunderland Central said about not necessarily needing to put everything in the Bill.

Without trying to sound like a broken record, however—I have made this point several times over the past few weeks—it is critical that in certain situations, although there may be some regulations or inferences that exist that may lead to certain outcomes that we on this Committee would all like to see, there is nothing necessarily wrong with putting them explicitly in writing.

Hon. Members have used different stats from different jurisdictions in their own way to lend weight to their arguments, and although many of those stats are relatively consistent in a number of areas, they are not necessarily decisive. I cited a stat yesterday when speaking to an amendment that around 10% of people using the assisted dying route have complications during the final stages, but as I said then, that came from an incredibly small sample size of just over 100 people.

It is therefore critical that, if the Bill is passed and we go down this path, we pursue robust and expansive data gathering in a number of different areas, and I am sure that any Government would look to do so. As long as it does not create any loopholes or unintended consequences, that sort of evidence gathering should be in the Bill because, at the very least, that would provide reassurance that it will happen if the Bill is passed.

[Sarah Sackman]

I do not have a lot to add, but I point out that, as the Bill stands, clause 34 requires the chief medical officer to, among other things, submit an annual report to the relevant national authority on the operation of the Act. Amendment 382 tabled by my hon. Friend the Member for Spen Valley would make the voluntary assisted dying commissioner responsible for that function instead. Amendment 274 would require that the report under clause 34 contains an analysis of the additional information to be collected under new clause 10 and amendment 273. I remind the Committee of that because we are discussing what information should be gathered, and at what point in the process. There is then the monitoring, reporting and co-ordinating function performed by the voluntary assisted dying commissioner, should those later amendments be passed.

--- Later in debate ---

[Daniel Francis]

I will speak to amendment 394 in my name, which provides that codes of practice may be issued on

“the provision of information and support to persons with learning disabilities who are eligible to request assistance to end their own life under this Act, including the role of advocates for such persons”.

I am aware that my hon. Friend the Member for Spen Valley may speak to amendment 517 and new clause 25, which we will discuss shortly.

I tabled a number of amendments, one of which was accepted, following conversations with Mencap. Dan Scorer from Mencap gave us oral evidence on advocacy support, the discussions and the role of families and said:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q355.]

I will not go on at great length—hon. Members have heard my views on support for people with learning disabilities, and I am conscious that we will come to other amendments on this issue—but I will move my amendment when we get to the relevant stage, in a manner consistent with the approach that I have taken in Committee so far.

[Jack Abbott]

I realise that we could be called away to vote at any moment, but I rise to speak to amendment 534. It is relatively small, and I appreciate that what it seeks may already be covered by regulations, but it would ensure that it is also put in a code of practice.

Anybody seeking an assisted death under the Bill who meets the eligibility criteria should be able to access it. However, there is a risk that the requirement that patients provide two forms of proof of identification could present challenges for certain groups, causing inequalities of access—[Interruption.]

[The Chair]

Order. The sitting is suspended for 15 minutes for a Division in the Chamber. The Committee will reconvene at 7.15 pm.

--- Later in debate ---

On resuming—

[Jack Abbott]

We all know that inequitable access to good quality health and palliative care is a massive issue across the country. People in certain communities—for example, those living in areas of high deprivation, those from black, Asian and minority ethnic communities and those from inclusion health groups, such as the homeless—already experience significant challenges in accessing quality care.

We have a duty to ensure that anyone meeting the eligibility criteria who wishes to seek an assisted death under the Bill can do so. We must therefore ensure that the requirements for which forms of proof of identity are acceptable do not exacerbate existing inequalities of access and prevent those who would otherwise meet the eligibility criteria from seeking an assisted death should they choose to.

The question of which forms of proof of identity are acceptable is therefore essential, as we know that photo ID requirements can present additional barriers to certain demographics and communities. Data from the Electoral Commission following the 2023 local elections found that while only 3% of all non-voters said that they did not vote because they did not have the required ID, that figure was 8% for unemployed non-voters and 9% for disabled non-voters who reported being “limited a lot” by their disability or health condition.

The data also found that awareness of ID requirements was lower among those without an accepted form of ID—only 74%, in contrast with 92% of the population overall. Awareness of the requirement was also lower among young people and those from black and ethnic minority communities. Clearly, a photo ID requirement could present barriers to equitable access to assisted dying. We must ensure that requirements about which forms of proof of identity are acceptable do not create new inequalities of access.

The requirement for proof of identity has been included in the Bill for a good reason, because it is a necessity and a critical safeguard. Ensuring that the Bill has the requisite safeguards for assisted dying to be safely implemented is essential to what the Committee is doing. It is therefore important to get right the question of what forms of proof of identity are acceptable for someone to access assisted dying under the Bill. We must also ensure equity of access to the service without diluting critical safeguards.

Clause 6 says that the regulations regarding the forms of proof of identity that are acceptable are subject to the negative procedure, but the issue is too important to be left to that negative procedure without sufficient parliamentary scrutiny. By including the requirements for which forms of proof of identity are acceptable in clause 30, the amendment would rectify that. It would entail that the regulations pertaining to which forms of proof of identity are acceptable under clause 6 are subject to the affirmative procedure and that, prior to the Secretary of State issuing a code of practice in relation to the question, they would have to consult such persons as they considered appropriate.

By agreeing the amendment, we would guarantee that the question of which forms of proof of identity are acceptable is given the requisite consideration. That would ensure that the requirements do not act as a barrier to equitable access to assisted dying, without diluting the safeguards that the requirement inserts into the Bill.

[Danny Kruger]

I want to quickly explain that my amendment 523 is consequential on amendment 447, but there is drafting issue. I will not go into the details but, if amendment 447 is made, as I understand it will be, my amendment 523 is not necessary. I would be grateful for the Minister’s guidance: if he has been advised by parliamentary counsel that the clause as amended by amendment 447 is okay and there is no need for amendment 523, I do not propose to press it to a vote.

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

Jack Abbott Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

Brought up, and read the First time.

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

I beg to move, That the clause be read a Second time.

I am minded not to press the new clause to a vote, but I have a few brief remarks to make. The new clause does what it says on the tin. It applies to the rare—I underline the word “rare”—cases in which two family members, particularly a couple, both receive a terminal diagnosis within a relatively short space of time and would therefore qualify under the Bill.

For very many couples, there would be absolutely nothing untoward. Many people will make a decision in their best interests, particularly if they have been married or partners for a significant period. The new clause stipulates that if any medical or healthcare professional receives any indication that a patient is seeking an assisted death at the same time as one of their family members, especially a partner, both the co-ordinating doctor and a registered medical practitioner from the person’s GP practice must be notified and the patient must be referred both for a psychiatric assessment and for an assessment by a social worker. The assessing doctor would then have to take into account any opinion provided by the psychiatrist and social worker and share it with the assessing doctor.

I appreciate that the new clause may be a little too prescriptive at this stage, but I would like the matter to be considered on Report and to be given further deliberation by the Government if the Act is passed and goes into the implementation phase. I think all Committee members can appreciate why such a scenario, rare as it may be, needs to be considered for the reasons we have discussed today in relation to coercion or other sorts of abuse, whether it is obvious or more pernicious. We know that in certain situations there will be people, particularly if they are married or in a long-term partnership, for whom such aspects may be at play. I am sure that they are a rare minority of cases, but I hope that these things are considered. Greater scrutiny is probably needed in these scenarios.

Essentially, the new clause would allow for a more comprehensive and thorough assessment of people’s wellbeing and social context, including their relationship. I am not minded to press it to a vote at this stage.

--- Later in debate ---

[Kim Leadbeater]

I thank my hon. Friend the Member for Ipswich for tabling the new clause. I have some concerns around the broad definition of “family member”. I also feel that it would be potentially excessive if there were a coincidental situation in which, tragically, two members of the same family were terminally ill. I worry about the extra burden it would place on them of going through an even more rigorous process when they had both been assessed under the thorough regime of the Bill, including the multidisciplinary panel. However, the point is worth discussing and I welcome the fact that my hon. Friend has raised it.

[Jack Abbott]

I appreciate the points made by the Minister and by my hon. Friend the Member for Spen Valley. “Family member” is a relatively non-specific description, but I think the thrust of the new clause is clear. Clearly, it is directed particularly at couples.

I fully understand why my hon. Friend does not want people to have to go through a huge number of extra layers; I have said at length several times that I do not want people at the end of their life to go through an awful period of sitting in endless meetings, assessments or courtrooms. However, I reiterate that although they would be relatively exceptional, there will be situations in which coercion and other sorts of pressure are potentially at play. I agree that that may be an incredibly rare scenario and that two people may just want to go through the stages towards the end of life together, but extra checks may need to happen at some point to ensure absolutely that there is nothing untoward such as other sorts of pressure or coercion, rare as that might be.

--- Later in debate ---

[Dr Tidball]

I beg to move, That the clause be read a Second time.

This is the final new clause of the Committee. As I said in support of new clause 25 and associated amendments last week, I want to strengthen the voice of disabled people in the Bill. New clause 35 would require the voluntary assisted dying commissioner to establish a disability advisory board that would report annually on the implementation and impact of the Act on disabled people. The new clause has been designed to ensure that disabled people have a voice at the heart of the Bill and an ongoing role in monitoring its impact.

The disability advisory board model reflects a structure that was used at the Department of Health to implement the Autism Act 2009 and monitor the implementation of its provisions, statutory guidance and strategy. It was a highly effective body. Including a disability advisory board structure on the face of the Bill would entrench the board in the work of the commission, enabling a long-term and iterative structure in which disabled people could report on the reality of the impact of the Bill on disabled people across this country.

This reflects comments made by Dan Scorer of Mencap in oral evidence. He said that if the Bill was passed,

“We would want to see strong representation from patient groups…as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280-81, Q367.]

The board must therefore consist of

“(a) people who have a disability under the Equality Act 2010,

(b) representatives from disabled people’s organisations, and

(c) other such persons or organisations as the Commissioner considers relevant to the impact of the Act on disabled people.”

The commissioner would, within six months of being appointed, have to appoint a programme board to advise on the implementation of the Bill, and annually thereafter report on the impact of the Bill’s operation on disabled people.

The clause reflects the learning of Dr Greg Mewett, the specialist palliative care physician from Australia who gave oral evidence to the Committee about the Australian implementation taskforce, which includes a strong disability advocate. My new clause would go further, by including a rigorous reporting process that requires the advisory board to report to the Secretary of State and the commissioner within six months of the commissioner being appointed, and annually thereafter. It also provides:

“The Secretary of State must, within three months of receipt of any report under subsection (3), lay the report before both Houses of Parliament.”

In the oral evidence sessions, I asked witnesses for their views on what structures or mechanisms could work to facilitate the opportunity to hear the voices of disabled people in monitoring the implementation and impact of the Bill were it to pass through Parliament. Dr Miro Griffiths said:

“I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services…I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 145, Q183.]

Subsection (2)(b) and (c) would provide for this.

Professor Tom Shakespeare corroborated the benefits of such an advisory board, calling it a “very good idea.” Importantly, Fazilet Hadi, from Disability Rights UK, stated:

“Should the Bill go through, it would be good to see a monitoring mechanism. I cannot say what that should be, but it would be good to see disabled people shape it. Some 45% of older people are disabled people, so disabled people are going to be very affected by the Bill.”

Poignantly, she went on:

“It is often our experience that we are the last people who are spoken to; maybe that is what is behind the question. We should of course be at the table now in respect of whatever mechanisms, and in the shaping of any implementation, should the Bill be passed.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 175, Q227.]

There is, and there should be, nothing about us without us.

As a disabled Member of Parliament, I am grateful to my hon. Friend the Member for Spen Valley for inviting me to sit on this Committee. Through this new clause and my earlier new clause 25, I have worked hard to put together a structure that ensures that disabled people are firmly at the table in the process of monitoring the implementation and impact of the Bill. I urge members of the Committee to support new clause 35.

[Jack Abbott]

At this point, I pay tribute to my hon. Friends the Members for Penistone and Stocksbridge and for Bexleyheath and Crayford. They have consistently tabled really important amendments that are very close to my heart, measurably improving the Bill.

I am briefly speaking in favour of new clause 35. We have had a number of good amendments about ensuring proper representation for vulnerable people during the process. We have also had a lot of discussion about the very important need to regularly monitor and report back on the Bill. This new clause brings all this together, ensuring that there is real oversight, with real thrust and a point to it. It is not good enough just to report back some statistics; the question is what we do with them. Having this sort of panel, with expertise and life experience, would be a significant step forward for people with disabilities, learning needs and anything else that might be included.

Once again, I pay tribute to my hon. Friends for this work. I am fully supportive of the new clause.

[Sarah Sackman]

I hope to be brief, given it is the witching hour.

This new clause would require the voluntary assisted dying commissioner to establish within six months of their appointment a disability advisory board. The advisory board must include representation from disabled people and disabled people’s organisations. Within six months of its appointment, the advisory board must report to the Secretary of State and the commissioner to advise on the implementation of the Act for disabled people. We anticipate that the advisory board’s annual report will be separate from the commissioner’s, and that in time this may be subject to a level of integration between the two bodies. Practical arrangements for the advisory board would require further consideration, but the Government can see no workability reason why this should not go ahead.