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

Jack Abbott Excerpts

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 (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

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 (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.

Oral Answers to Questions

Jack Abbott Excerpts

Tuesday 5th November 2024 Commons Chamber

[Alex Davies-Jones]

This Government are leading the way with our mission to halve violence against women and girls—all women and girls. The Victims and Prisoners Act 2024 will require local commissioners to develop joint needs assessments for victims of sexual abuse in order to identify and address the current gaps, and to support these women.

On outlawing pimping websites specifically, I would encourage my hon. Friend to speak to the Minister for Safeguarding, but as I have previously mentioned, this Government are working holistically across all Government Departments, including the Department for Science, Innovation and Technology and the Home Office, to tackle violence against women and girls.

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

13. What steps her Department is taking to help reduce reoffending.

[The Parliamentary Under-Secretary of State for Justice (Sir Nicholas Dakin)]

Good reducing reoffending activity cannot happen in overcrowded prisons, which is why we took immediate action to relieve the pressure. This will allow for better access to purposeful activity, which we all know reduces reoffending.

[Jack Abbott]

It was a former Prisons Minister who identified that short custodial sentences have a higher reoffending rate than sentences served outside prison. Does the Minister agree that we need to look at using technology to curtail offenders’ freedoms outside prison and ensure that we cut the cycle of crime?

[Sir Nicholas Dakin]

Yes. Electronic monitoring is already an important part of safely managing offenders in the community, and one of the principles of the sentencing review is to look at the punishment that offenders receive outside prison, considering how we can best use electronic monitoring and other technologies to safely manage offenders outside the prison walls.

--- Later in debate ---

[Shabana Mahmood]

I am shocked to hear about the extent of the delay in the case of the right hon. Gentleman’s constituent. He is welcome to write to me with the specific details and I will ensure he gets a meeting with the relevant Minister.

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

T3. Earlier this year, it was reported that over 1,000 cases at Ipswich Crown court are outstanding. At the last count, each case was taking an average of 249 days to be dealt with, with 144 cases unresolved for two years or more. What can the Minister do to reassure my constituents, as we look to clear the terrible backlog left by the previous Government?

[The Minister of State, Ministry of Justice (Heidi Alexander)]

The Government have made it clear that we are fully committed to bearing down on the Crown court caseload. To relieve pressure on Ipswich Crown court in particular, the south-east region has begun sending appropriate cases to Cambridge Crown court for hearing. Nationally, we have increased the number of Crown court sitting days to 106,500, which is 500 more than agreed by the previous Lord Chancellor.