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

Tom Gordon Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Sojan Joseph (Ashford) (Lab)]

I want to talk about amendment (b). The right hon. Member for North West Hampshire said that all members of the Royal College of Psychiatrists are already members of the General Medical Council. But not everyone on the General Medical Council is doing the same job. Psychiatrists are experts whose day-to-day job is to manage people’s mental state, and deal with people with suicidal thoughts and depression. They are the experts.

I do not think that all members of the Royal College of Psychiatrists are for or against the Bill, so it would be reasonable to listen to those people who are experts in assessing people’s mental state and whether they are having suicidal thoughts—that is part of their job. I strongly support that part of the provision.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I want to touch on a few bits of language that have been used so far that just worry me slightly. When we talk about the value that experts can add to this process, it is not necessarily helpful for someone to try to say that some experts would be better than others in that regard. The phrase “best person” was used in one particular instance and there were comments about whether or not experts would add balance.

The list that has been collated has taken the lead sponsoring Member of the Bill a number of weeks and months to produce. Everyone had the opportunity to feed into that process over a period of time. And on balance, it is a list that captures a wide spread of views and different organisations.

During this sitting a number of points of order have been made to correct the record. In the spirit of the Second Reading debate on the Bill in the House of Commons, we need to try to make sure that we are mindful of any comment we make, so that we do not seem to try to say things that are not necessarily accurate.

The point that was made earlier about eight witnesses coming from foreign jurisdictions is important. My understanding of this whole process is that it is not about our trying to decide whether the Bill should go ahead or not; it is about trying to understand what would be workable. So, hearing from people in places that have already implemented assisted dying is far more useful than hearing from people in countries that have not done so. We have also heard from Members about which of those countries are more comparable to us.

It does not necessarily help us if someone takes us round in circles and talks about the point rather than trying to get on with the work. I fear that that is where we are at with these amendments. If we are now trying to rejig who will give evidence and at what time, that stops us from doing the important job of scrutinising the legislation and hearing from the expert witnesses that we want to call.

These amendments are not minor changes. Regarding the list that has already been collated, I know that it has taken a lot of time to establish when the witnesses on it are free and available to give evidence. I am not sure that those witnesses referred to in the amendment have the same level of availability in their diaries. So, on balance, we should proceed as the lead Member has been putting it, and putting it so well.

--- Later in debate ---

[Tom Gordon]

Will the hon. Member give way?

[Naz Shah]

Sorry—may I just make my point?

I need to know the other side of the argument in order to make a balanced decision. Those who are opposed to the Bill might have very valid concerns, while those who have expertise in support of the Bill might not give me the same arguments. I want to hear a balance. At the moment, I think there is a real discrepancy between the number of people who are for and against the Bill; it is not very close.

I appreciate that my hon. Friend the Member for Spen Valley, the Bill’s promoter, really wants to get this legislation through Parliament. I also value how she has taken part in the debate and been amenable to having discussions both in Committee and in our offices. I have given my reasons for tabling the amendment, and I particularly want the Committee to accept amendment (b), on the Royal College of Psychiatrists; that is my top amendment.

Question put, That the amendment be made.

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

Tom Gordon Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[The Chair]

Order. We are going slightly off topic, so could we have a brief answer?

Glyn Berry: It would be something that is equitable for everybody. At this moment in time, it is not. As I say, some people get it and some people do not. A sustainable model would give fair access to everybody.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q In its current form, the Bill looks quite heavily at medical professionals; we have already heard from lots of experts in that area. In social care and palliative care, you often deal with those difficult conversations. What lessons and advice might you be able to give? How might you feed into the process?

Glyn Berry: We work very closely with clinicians and other health professionals. We talk about a multidisciplinary approach, because a person is not just two-dimensional; everything about their life needs the input of others in these situations. As social workers, our expertise and strength is in being able to ask difficult questions and really dig into people’s thoughts, feelings and opinions, giving them an opportunity to say things that sometimes they have never said in a whole lifetime. Other areas are around assessing capacity and giving people the option of knowing that there is not just one way of doing things.

I have worked in a hospice setting for the last six or seven years. I see daily how social workers contribute to the wider MD team in terms of safeguarding, capacity and applications for deprivation of liberty, but we also do the psychosocial aspect of palliative and end-of-life care. We sit and talk with patients, we do advance care planning and we deal with practical aspects such as supporting the arrangement of funerals. For families in which the parent or primary caregiver is the person who is ill, we will work with external statutory agencies like local authorities to give support where there may be children or vulnerable adults who are being cared for by the patient, to have provision put in place for after the death of the person. We also provide pre-bereavement support for both the patient and the family, and post-bereavement support for the family.

We have quite an extensive skills catalogue to support patients and families, but one of our biggest skills we have is in communication and in not being afraid to go where other professionals may feel uncomfortable going. Having conversations about people wishing to end their life is not a new thing: we have those conversations quite regularly.

[Tom Gordon]

Q That is really helpful. I wonder how people like you and organisations like yours see your role in the assisted dying process. Do you think it might be better if you were further involved?

Glyn Berry: In our association, we have a list of recommendations. We are very conscious that the Bill is very heavy from a clinical perspective. There are a number of things. We do not feel that the decision and assessment should be all on the shoulders of a health professional, the clinician. Some clinicians are fantastic with assessing capacity and being aware of the safeguarding aspects of situations, but not all are, and we feel that our expertise lies in that particular area.

When we look at the overview of the process set out in the Bill, it is very, very clinical. Nowhere does it talk about the clinician exploring the other aspects of a person’s life; it is very much around the clinical aspect, and quite rightly so, because these are experienced clinicians. We feel that we should be involved in these decisions from the capacity and safeguarding aspect, but also in seeing whether there are things we can do to help the person make a more informed choice. If their decision to take their life is based on the fact that they do not have secure housing, that their benefits or finances are all over the place, that they do not want to be a burden on their friends or family, or indeed that they have nobody at all, those are areas that are very familiar to us in our daily practice. We therefore feel that we are well placed to support the clinicians in the whole process.

[Tom Gordon]

That was a really comprehensive answer. I think the key point that you touched on is the multidisciplinary approach.

[Juliet Campbell (Broxtowe) (Lab)]

Q Thank you both very much for being here today. Throughout this whole discussion, for many months, there has been a lot of talk about palliative care and pain management, which can lead patients to come to a decision or to consider assisted dying as an option. If a doctor has suggested to a patient that assisted dying is an option, or a patient has said that they are considering assisted dying, do you think that they should be referred to another clinician? Or do you think that there should be an independent organisation—a non-clinical setting—where a patient can go to have further discussions before taking the assisted dying route?

Professor Ranger: I think there is something really important about having a big difference in the beginning with regard to palliative care and assisted dying, and pain management. It is essential that those two things are slightly separated, because it would be heartbreaking to think that pain management was the primary reason that someone wanted to be assisted to die. We should be able to control and support someone’s symptoms and pain.

I think the primary thing with regard to being referred to another organisation is autonomy. I absolutely agree with what was said earlier: you would want anyone who is considering assisted dying to be slightly separated out of their normal clinical pathway, so it is not part of mainstream care for someone in a hospital or an organisation. There is something really important about separating that out, both in the discussions around the decision making and in any care involved in assisting them to die. I think those two things do need to be separated.

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

Tom Gordon Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[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.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q To build on that point—which is pretty much what I was going to ask and what I am trying to get to—Sue Ryder’s evidence to the Health and Social Care Committee inquiry into assisted dying gave examples of exactly that: cases where increases in the funding of palliative care came alongside the introduction of assisted dying. You talk about people not being able to have an informed choice unless palliative care is fixed, but do you accept that improvements can run in parallel for both assisted dying and palliative care, and that the small number of people for whom palliative care cannot help and cannot reduce their suffering are currently left without a choice?

Dr Cox: I accept that there will be people even with a very good palliative care system who would still choose assisted dying. We do not currently have the very good palliative care system that we need. That is the thing that concerns me.

[Tom Gordon]

Q What further steps do we need to take to improve palliative care? How do you define when palliative care is sufficient to allow assisted dying? I am struggling with how we say we have reached that threshold. Is there ever going to be a point where we can say we have got the best palliative care?

Dr Cox: I will give you some examples. We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals. We need to make sure that communities have telephone advice services at night. One in three do not have any advice overnight for patients and their families to access. There are some concrete things that we could change to demonstrate that we are delivering a good service. But currently we are not.

[Tom Gordon]

Q Since the assisted dying Bill had its Second Reading, we have seen announcements from the Government about investment into palliative care. Obviously that is mostly capital and we need to see more long-term funding. Do you feel we are already seeing increases as a result of this conversation? Is there any reason why that should not continue?

Dr Cox: I would love to see it continue. I am part of the commission on palliative and end of life care. There is no guarantee that the recommendations of that commission will be funded, and that is what concerns me. I would love to see that happen. Would it not be great if the two could happen simultaneously? But there is no guarantee that that will happen.

James Sanderson: I want to come in on your point and agree with Sarah’s points. Obviously, we welcomed the Government’s announcement of the additional funding for the hospice sector, but the Committee will be aware that the hospice sector currently receives only about 30% of its funding from statutory sources. We are therefore reliant on the good will of the population to raise money and support us in various ways, and through retail and other ventures that we have.

On the point about universality of service, we have in the Health and Care Act 2022 a requirement for integrated care boards to commission palliative care services that meet the needs of their population, but although there is guidance as to what that should look like, there is not universal take-up of that guidance and delivery of all of the stated services. Although that is outside the scope of this Bill, it comes back to the context of how much the overall position can be strengthened across the country. The context for anybody looking to make a decision is within the same space. As Dr Clarke said in respect of informed choice, if the context is the same for everybody, we can have more confidence that that informed choice is made at the right level.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Goodness me, there is a lot to cover.

To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses.

Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions.

I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that.

Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that.

Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level.

The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way.

What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that.

The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity.

Dr Clarke: Regarding training and how much it is required, I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.

What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not.

The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it.

This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.

--- Later in debate ---

[Tom Gordon]

Q It was suggested by people who gave evidence earlier today that people might start exploring the option of assisted dying for fear of feeling a burden, and that the law cannot adequately deal with people who might be self-pressurising. Is that something that you have seen and witnessed? How do you address that motivation with your patients?

Dr Spielvogel: People often feel that at the end of life, just in general. I think that conscientious people will often think about their family and how their situation is affecting their family and loved ones. That is something that many people go through, so that is something that comes up relatively frequently. It is usually embedded within a laundry list of reasons that people are looking for assisted dying. When people bring it up with me, it is more of a commentary on what they do not like about their dying processes—that they are also feeling like a burden on their family. That is a red flag for me, though: when I ask someone, “Why are you reaching for this?”, and they say, “Well, I am a burden to my family,” it is a red flag for me as a physician.

This goes back to the argument about capacity and coercion, because we are trained professionals who listen for these things. This is not a rubber-stamp evaluation. When we ask people why they are looking for this, we really want to assess their judgment and see what their reasoning is. If they are saying, “I’m suffering intolerably. I’ve tried all the things that palliative care and my regular physician are offered me, but I’m still suffering irrevocably. Also, there is this other piece: I see what this is doing to my family,” that is totally valid. That is something that any of my dying patients might say, whether or not they are seeking an assisted death.

If that is the only reason, that is going to lead me to ask a lot of probing questions. It would be a red flag for me, but it is incredibly rare that something like that would be the only reason. Dying is a very complex process, and people’s thought processes during their own dying are equally complex. There are a lot of things that people think about during that time.

Dr Kaan: I echo Dr Spielvogel. It is common that among the lists of things that people mention as reasons, they may mention not wanting to be a burden on their families or not wanting to put their families through an onerous and prolonged dying process. Obviously, if that is the only thing that they are mentioning, it will definitely get them further discussion and exploration into what is going on and what other resources we can point them to, such as connecting them with social workers and available community resources for helping with caregiving.

However, I hear most commonly that people’s desire to save their families from a prolonged dying process comes from lived experience, where they themselves went through the process with a loved one such as a mother or father: they were caregivers, sometimes for years, and felt that it was a burden on them, although they were happy to do so and it was loving. They have that lived experience and they are looking to save their family from what their experience was. I think it is common that people feel some element of that when they are in a situation where they require heavy caregiving.

I think it also goes back to autonomy. People who are in their right mind and have the capacity to make this decision should have the autonomy to have their reasons and their value systems respected, whether or not we share them or see it in the exact same way.

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

Tom Gordon Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sarah Olney (Richmond Park) (LD)]

Q Dr Griffiths, do you think it is possible that disabled people are likely to be or potentially more at risk of being coerced or otherwise persuaded to seek assisted dying as a result of the Bill?

Dr Griffiths: I think so—I think the coercion principles outlined in the Bill are incredibly weak in terms of the scrutinising and the process of how you judge whether coercion has taken place. We know that coercion is a complex issue, but put that against the context of disabled people’s lives; we are talking about disabled people who are struggling day to day to access sufficient support and to live in participatory, accessible societies. The feeling, then, of societal coercion—the feeling that this is a tolerable idea—highlights my concerns about coercion.

It also plays into the issue of support and assistance to understand what your rights are, not just in terms of what we are talking about here but broader disabled people’s rights. There is a lack of advocacy services available to disabled people, and there is a lack of support for disabled people to have accessible information about their rights. If you feel that assisted dying is your only choice—as opposed to accessing support or calling out discriminatory practices in, say, access to social care and healthcare—that highlights, again, situations where coercion will manifest. The infrastructure to support people either to respond to coercion, or to understand that they do not have to be in that position in the first place, is non-existent.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q One of the things that we have heard from other countries that have assisted dying is that this is one of the strongest and most robust laws. I wonder whether Professor Shakespeare has any more views on how we could make the Bill even tighter, and provide support and further peace of mind to people who might be worried about it?

Professor Shakespeare: When I read the Bill, I thought that it did have many safeguards. It has, for example, five opportunities for a conversation with doctors or other supporters. That is a good safeguard. I think it makes a criminal offence of dishonesty, coercion or pressure, so that would scare off people. Miro is quite right—there are people who might put influence on somebody, but I hope that they would be covered under clause 26 as having committed an offence. That would scare people who may have a particular view against assisted dying.

How can we make it stronger? We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision. We are trying to make sure that everybody who is thinking that this is for them has the opportunity to talk about it and to think about it. The time and the conversations are all about that, but maybe an advocate also would be the person who is requesting this step, who is not a beneficiary in any way of that death, and they could be a neutral party to give advice. I am not sure. However, there is a lot here. There are five conversations. I am not surprised that people thought it was strong. I think it is a strong Bill.

There is scope for doctors and other medical practitioners to act on their conscience and to withdraw from this. Miro made a useful point, which is that we do not want any disabled person frightened of their doctor or worried that their doctor, who has been supporting somebody else to die, might do that with them. In conversation, Marie, we have talked about an assisted dying service as being a part of the NHS, but I wonder whether it might be specifically around this. I think that it is worth considering whether the average doctor is the person to whom a person should take a concern or a wish to die.

So this is about advocacy and maybe having a specific service for people who want to go down that route. However, I think it is a strong Bill as it stands.

[Tom Gordon]

Q One of the things that we have heard from other people and other jurisdictions is about moving away from a High Court judge, and having a multidisciplinary team and panel. Do you think that would further strengthen the Bill, and would you support that?

Professor Shakespeare: I think the law is only one of the influences that might be involved. There is also physical health, mental health and social wellbeing. I think a multidisciplinary panel might be a better way of finding out. But I bow to my friend Mr Amin, who has a lot more experience of legal panels than I have.

[The Chair]

Mr Amin, do you want to comment?

Yogi Amin: The way the Bill is drafted, the judges reviewing the case are not making an order; they are declaring a plan that someone else has produced and has put in front of them. It is a strong, independent, legal and judicial safeguard, as part of the Bill. My written submission, you will note, says that the courts are well used to doing that. The courts have been doing it for many years. They have been dealing with disputes over facts, disputes over capacity and disputes over medical treatment. They are able to identify safeguarding issues. The courts and the judges are certainly able to do it. I am not speaking to the question of capacity. If the question is about whether to introduce something different from a High Court judge, I will wait to see it and scrutinise it, but as it is drafted at the moment, I would say that a High Court judge is a strong legal safeguard as part of the mix of safeguards in the Bill.

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

Tom Gordon Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

Order. I am sorry, Meredith, but we have to move on to the next question.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q My question is probably more for Alex. When you were coming to the criteria and the safeguards in the Bill in your state, how did that then interplay with other regions and states nearby? Obviously, in the UK the Bill that we are looking at would be applicable to England and Wales. Scotland has its own assisted dying Bill, which is happening at the minute, and we will hear about that later on. Is there information you can share? Can you talk about how different states and regions interplay with each other when they have assisted dying laws?

Alex Greenwich: New South Wales was last in the nation when it came to adopting voluntary assisted dying, and that was actually beneficial because we were able to draw on the experiences of particularly Victoria and Western Australia to make sure that things like the gag clause were not in place. With all respect to the introducer of the Bill, as a result of the Australian experience this is not a revolutionary law reform. It has been tried and tested, we have appropriate safeguards in place throughout Australia, and they work.

[Tom Gordon]

On that—

[The Chair]

Order. I am sorry, but you are only allowed one question.

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

Tom Gordon Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Kim Leadbeater (Spen Valley) (Lab)]

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

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

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

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

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

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q Dr Ward, I think the point about a holistic and evidence-based approach is critical. In the work that you did in the Scottish example you gave, how was the terminal illness definition arrived at? How are you capturing those people who are vulnerable and want to have an assisted death, but might end up limited in their scope and ability to access it?

Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.

I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.

[Naz Shah (Bradford West) (Lab)]

Q Professor Owen, yesterday Professor Allan House gave evidence and talked about capacity and coercion, and I want to pick up on some of the concerns. In all four of the jurisdictions that collect data on the issue—Oregon, Canada, Western Australia and Washington—between 35% and 59% of people cite being a burden as a reason for assisted dying. What do you think is the level of confidence of psychiatrists to assess capacity and consent reliably? What would your concerns be, if any?

Professor Owen: This is an essential question. I work clinically in the over-65 age group, where there is a lot of terminal illness, some of it in the last six months. You have to understand the population. The population is typically over 65 and frail. There can be a terminal illness, very typically with comorbidity. That comorbidity is often mental health comorbidity. Depression is at rates of 20% or thereabouts. Delirium and cognitive impairment is very common and often not picked up. There is patchy safeguarding, patchy access to social care and, as I know you have been hearing, patchy access to palliative care.

That is the ordinary person in the NHS. I know people who select into assisted dying are not necessarily that mean person, so to speak, but that is just a picture of what it looks like for me when I go to work. That is where one starts. Now think about burden. Well, this is a group that do feel very burdened. You might think some of that is excessive; some of it maybe is natural, given the life stage. So it is a mixed picture.

When it comes to pressure and coercion, I know you have been grappling with this a lot as a Committee, and I know there have been some amendments that address this. We have talked about clause 26 particularly in relation to this. Of course, when it comes back to the training question, you can take evidence on the state of safeguarding and how people are really able to assess coercive control, domestic violence and so on.

I would like to draw attention to something else that I am not sure has come so much to the attention of the Committee, which is not the offences or the criminal side of this; it is the common or garden capacity assessment side of it. This relates really to clause 1. It is the issue of how you deal with interpersonal pressures on somebody in a situation where there may be a mental health problem and there may not even be a diagnosis. You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability. But it is there and it is interacting with a form of pressure within a family, let us say, which is often not malign in its intentions, but it exists. It is a very overvalued relationship, for example, with a strong sense of loyalty to somebody, or an enmeshment, for example.

What you have are situations where there is an impairment and also an interpersonal pressure. They interact and they amplify each other. That can have an important consequence in terms of the functional ability of mental capacity. Outside of the assisted dying context, when you look at that in the Court of Protection, which has been struggling with quite a lot of cases like this, that phenomenon of interaction that I am talking about between interpersonal pressure and impairment is recognised. It struggles with it. I have been involved in some research to try to structure the understanding of it, but it is not at the point where it is a kind of training manual that you can lift down from the shelf and roll out across the workforce. It is much more in a kind of research and development phase.

So it is important to draw attention to pressure not necessarily as malign in its intention, but which nevertheless operates in these situations and can have a subtle impact on the functional test of decision-making capacity. To bring us back to what the decision-making capacity is that we are talking about, it is the decision to end one’s own life.

--- Later in debate ---

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

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

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

[Tom Gordon]

Q Professor Preston, we have heard from a wide range of different people from different jurisdictions. What we have heard and the evidence suggest that where we see assisted dying as an option, we tend to see improvements in palliative care. Do you have any comment on that and how we could better integrate into giving people that choice? You talked earlier about different routes and different systems in countries where it might sit outside the healthcare setting. Would that limit the choice and hinder people’s ability? How do you see that having a play in this?

Professor Preston: There is a bigger and bigger conversation in a lot of these countries, including the Netherlands and Switzerland, that this is not about healthcare. I know that sounds a really strange thing, but it is about self-determination and a life choice. I remember someone saying to me, “Well, you wouldn’t check who I’m marrying.” They feel it is such a personal choice. I think patients do bring this up. They bring it up all the time now. Studies in Spain have shown that if a patient has a desire for hastened death, the best thing you should do is explore that desire. Why do they have that desire? How can we help you? Are there other needs we can meet? Most people will not want to then go ahead and have an assisted death. This is a minority of people. Could you remind me of the rest of your question?

[Tom Gordon]

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

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

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

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

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

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

[Dr Opher]

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

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

--- Later in debate ---

[The Chair]

Q Thank you. I can see that our third guest, Julie Thienpont, has appeared on screen. Welcome, Julie. Would you like to say a few words before we continue?

Julie Thienpont: I am Julie Thienpont, and my husband and I were living in Spain at the time. My husband was diagnosed with mesothelioma and given three months left to live, so he opted for assisted dying. It was quite a rigorous process in Spain. It only came into law there in 2021, and he was one of the very first people in the south of Spain to take the opportunity of assisted dying.

[Tom Gordon]

Q Thank you all for coming here and sharing your personal experiences. I think it really adds to this, and it is why we are all here. My question is about access, which is one of the conversations surrounding the Bill, and how, if we do not legislate now, we might not see another debate or Bill brought forward for potentially a decade or longer. What are your views on that? I think some people see it as a point from which we either will progress or will not. Do you feel that this needs to be a continuing conversation, particularly with regard to palliative care and the experiences that your loved ones might have had in that system?

Liz Reed: As I said, my brother died in a hospice in Australia, where the hospices are extremely well funded, and the care he received was sensational. The team and the staff in that hospice made the time he had in there. Obviously, it was not amazing, because he was dying, but for a really difficult situation, it was comfortable for his family, and he had young children. You could not fault the care and access to the medication. We as a family, after he died, went back to the hospice to say, “This was changing for us and for him.”

But it did not change what was happening to my brother. He went from a hospital to a hospice, and he had a date planned for his death. He then actually changed his mind and extended it, because it was better than being in a hospital and the hospice care was great, but he still landed at the same point of saying, “This is not living.” It was not what he wanted, and not what he wanted. From a personal perspective, when he was diagnosed, we said, “You’ve got to come home.” But actually, I think, “Oh my God, what would have happened to him? How long would he have had to go on? How long would his children have had to watch him?” He was only 39 and his children were young, and they did not have to—they still remember their dad. For him, for his wife and for our family, I would not change anything.

[Lewis Atkinson]

Q Pat, if the Bill, as it is currently drafted, had been in place in your family’s situation, what difference would that have made to your family’s experience?

Pat Malone: In all three cases, it would have improved their lives and their deaths. My father died at the age of 85 from pancreatic cancer. He asked me to help him kill himself while he was in hospital in the last three or four weeks of his life. Obviously, I was not able to do so. He suggested that I put poison in his water, which I had no idea how to action. I spoke to his consultant and asked whether he could do anything to hasten his end, and he said, “No, no, no, I can’t.” After that, he lasted another three weeks and he had a horrendous death. It has scarred our family to this day.

My brother contracted the same disease, pancreatic cancer, and having seen my father die, he—having gone to six doctors and asked them whether they could help him end his life; he was under home hospice palliative care at that time—contrived his own suicide. Unfortunately, he asked his wife to sit and hold his hand while he died, as a result of which there was a police investigation into collusion. She and her daughter, who was also in the house at the time, were not cleared for eight months, during which they were interviewed repeatedly about anomalies and what they did or did not know. It was absolutely unconscionable to pile that on top of their grief, at a time when they had just lost their father and husband.

My sister’s death, having seen those two deaths, was much easier. She got motor neurone disease and was not really suffering in the way that my father and brother had been. She knew that her end was going to be as a live brain in a dead body, and that was the horror that she faced. From the beginning, she was fixed on going to Dignitas, which she did. It was not easy because, after the example of my brother’s family, she would not allow anybody in her family to have anything to do with the arrangements that she had to make, which were quite complicated and became ever more difficult for her. First, she could not drive a car any more and was going around on a mobility scooter, gathering endless documents and having all the tests that you need to have. Ultimately, she said, “This is my golden ticket.” When she was accepted by Dignitas, she said that it was the greatest relief of her life. She said, “I know I am not going to get cancer or dementia. I’m going to die painlessly at a time and place of my choosing.”

That is exactly what she did, but she died 1,000 miles from home. She should have died in her house with her family, and her dogs on the bed. She should not have been denied that. Had this Bill been enacted in her time, it would have been a much easier operation. The problem with this legislation mainly is that it is so long overdue. There are people now who are in that position. You may think our family is star crossed because we have had three deaths like that, but I think we are just a normal family. It is happening all the time. Chris Whitty talked on Monday about how we should not rush into this. We are not rushing into it; we are at the back of the queue, really.

--- Later in debate ---

[The Chair]

In the interests of time, to allow everybody to ask their question, will Members indicate which of the panel members they would like to answer so that only one gives an answer? That allows everybody to get in.

[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.

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

Tom Gordon Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Sarah Olney]

That is an extremely wise observation. I regret enormously that there was not more opportunity, before the legislation was drafted, to have those discussions between experts, advisers and others who really know what the Mental Capacity Act means and whether it is sufficient for this purpose. The best that we can do now is reflect on the evidence that we have received. In many ways, that is what I am hoping to address with my amendment: to redefine “capacity” as “ability”, to transfer the responsibility for defining how ability should be assessed under the Act to the Secretary of State for further analysis and consultation, and then for that to be laid out properly.

When assessing people’s ability to make the decision, we want to take into account their ability to understand, retain, use and weigh information, and to communicate the decision. That will still be at the heart of an assessment of whether an individual is making the decision for the right reasons. A whole range of things might affect a person’s ability to make the decision. I have mentioned many times mental disorders such as depression, which is more common in people nearing the end of their life. Delirium, which is common in people with advanced illnesses, needs to be assessed. There is the complexity of people who have a physical terminal illness alongside a mental disorder; I think particularly of people suffering from an eating disorder, which is primarily a mental health condition but clearly has physical health implications. If the mental health condition is not treated or is resistant to treatment, the physical manifestation of the eating disorder can quickly become a terminal illness. That is a really important point that we need to reflect on.

The feelings of hopelessness that may come alongside a diagnosis of terminal illness may affect a person’s ability to weigh information. Anxiety can amplify their fears of future suffering, and types and doses of medication can affect capacity. All sorts of people can suffer vulnerabilities from external factors such as the lack of realistic alternatives like palliative care services; overt or implicit coercion; personal losses including bereavement; poor housing; financial hardship; and loneliness and social isolation. Understanding and responding to those vulnerabilities is at the centre of suicide prevention, but absent from the Bill.

We have to remember that the Bill would apply to people who are said to be within months of death but may not be, to those who may die within months but otherwise have a very good quality of life, and to people whose trajectories to death vary greatly. In his written evidence, Professor Allan House states that

“careful inquiry is justified because a statement about wanting to end one’s life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others. Simply checking mental capacity and asking about coercion is not adequate.”

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I understand the concerns my hon. Friend is raising about assessing mental capacity. Does she acknowledge that throughout this process mental capacity will be assessed not once but multiple times? What does she say to that?

[Sarah Olney]

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

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

for decisions relating to assisted dying or assisted suicide—

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

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

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

Tom Gordon Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

One of the major concerns that we have heard from members of the public and MPs relates to the importance of ensuring that appropriate safeguards are in place, so that people make genuine choices and do not request an assisted death because somebody else has pushed them towards it. For that reason, it is vital that subsection (2)(b) is as comprehensive as it can be. It currently refers specifically to a person having been “coerced” or “pressured”, which covers only the more direct kinds of influence, not more subtle ones. It seems clear to me that amendments are required to ensure that more subtle kinds of influence are covered adequately, and that clinicians do not just look for obvious signs of coercion or pressure when considering eligibility.

In her oral evidence on 29 January, Dr Mullock said:

“In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, ‘This will be better for you,’ and, ‘Have you considered this?’ That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 162, Q204.]

Amendment 23 would add the term “unduly influenced” to the clause. It is an important addition, as it is a recognised term in law. It is designed to ensure that relationships of dependence are considered. In some cases, there is no bad intent, but there is a power differential, subtle as it may be, and it is important that we recognise how strong it can be. A child not wanting to disappoint their parent; a wife not wanting to go against her husband’s wishes—there may well be no threats or explicit pressure, and there may be a lot of love shrouding it, but the influence is there and it is strong. That is why the concept is applied in probate cases to test whether someone has faced influence, domination or pressure that prevents them from exercising free and independent volition with regard to the act. It has also been applied in medical decisions, including over a refusal of treatment that can lead to death. For example, there was a case of a Jehovah’s Witness who refused a lifesaving blood transfusion under undue influence from her mother. It is therefore a natural addition to the Bill.

In important judgments, the courts have said that undue influence will have more impact on people who are very tired, in pain or depressed, and that

“a patient in a weakened condition may be unduly influenced in circumstances in which if he had been fit, he would have resisted the influence sought to be exercised over him.”

This legal concept could have been designed for the context of assisted dying. That is why it is important that the amendment is made. In her oral evidence on 28 January, Dr Cox said,

“I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 73, Q90.]

I would also like to point out that California’s law prohibits coercion or undue influence, so there is established precedent in using this phrase in the safeguards of assisted dying law. If we have the ambition for our law—if it is to pass—to be the safest in the world, we need to add the term “undue influence” as a minimum.

Even with that additional safeguard, however, Dr Spielvogel rather worryingly said in his oral evidence,

“I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 101, Q139.]

Richard Robinson of Hourglass, in his oral evidence, said,

“I think that coercion is underplayed significantly in cases of abuse of older people…One of the biggest issues we face is the fact that we have no idea of the levels of training that healthcare professionals and the judiciary receive to understand and recognise coercion. That leaves us in a situation where medical professionals say that coercion in these circumstances is minimal, but people need to understand what coercion is and how to recognise the signs of it in the first place, especially bearing in mind that the vast majority of cases that we see take place in the home and by family, rather than by professionals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 158, Q196.]

Additionally, psychiatric and legal experts have said that undue influence is relevant in this context. In written evidence, Professor Allan House refers to undue influence as

“coercion in its less overt or threatening forms”.

He also draws attention to the great risk of undue influence in the case of couples seeking assisted suicide at the same time. The probate lawyer Tamasin Perkins, in an article on the Bill, says,

“Undue influence or coercion is depressingly common in the arena of contested wills and gifts.”

She suggests that the current law on undue influence could be usefully incorporated into the Bill. To those who worry that adding undue influence could make things more difficult for clinicians when assessing, I would say that it is absolutely right on something of this gravity that rigorous consideration is given to the possibility of undue influence.

I turn to amendment 82, which adds the term “encouraged” to coercion and pressure. This amendment is in line with Dr Mullock’s advice in both her written and oral evidence. It is important to note that encouraging suicide is currently a crime under section 2 of the Suicide Act 1961. It is also important to note that the Bill does not decriminalise encouragement, only assistance. Clause 24 decriminalises only the assistance component, not the encouragement component. Thus, if the Bill were to pass, encouragement of assisted dying would still be a crime. That is absolutely right and something that I fully support.

As encouragement of suicide is clearly recognised as a heinous crime, it surely must follow that when considering whether someone is eligible for such assistance to end their life, consideration is given to whether they have been a victim of such a crime. This feels like a rather basic safeguard that is missing from the Bill and must be rectified. As former Attorney General, Victoria Prentis, has written,

“maintaining the prohibition on encouraging suicide is key to protecting vulnerable people”.

She says it is a problem, though, that

“doctors and judges under the bill are not required to check whether the person’s decision is their own or whether they have been encouraged by others.”

She goes on to say that she hopes the Committee will support my amendment, and David Hughes—formerly of the Law Commission—says that keeping the offence of “encouragement” would help to prevent “insidious pressure”.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

The hon. Lady uses the term “encouragement”. If I were in a situation where a loved one wanted to access assisted dying, and I said I supported their wishes, would that fall under the scope of encouragement? We do not want to end up in a situation where people who support their loved ones end up dragged through a legal process, when it is actually the case that they are there to enable their wishes, rather than pushing them to it. How would she differentiate between those?

[Rebecca Paul]

That is an important point. Obviously, case law becomes quite important in this. Supporting someone’s decision is very different from encouraging someone who was not in the place of wanting to go through with assisted dying. Again, these things do sometimes end up in the courts, because sometimes it can be a grey line. It is important that we have this protection. Right now, it is an offence to encourage someone to commit suicide, and we need to recognise that. That is the law right now.

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

Tom Gordon Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Danny Kruger]

Yes, but I simply state on the record that I believe that this is not the end, but the beginning of a wider Bill that would follow if we passed this one. I am encouraged by what the hon. Lady says, or implies: that she does not want to go further than this Bill.

My plea to the Committee is straightforward. Let us confine eligibility to the people who the campaigners talk about: those with diseases or illnesses that are genuinely terminal. We can do more to strengthen that definition with later amendments, but, first, we have to remove the gaping hole in the fence that is this term “medical condition”. Let us remove that term.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Marie Curie’s definition of a terminal illness is

“an illness or condition which cannot be cured and is likely to lead to someone’s death”.

It is obviously one of the best-known end of life charities, so how does the hon. Member reconcile the differences he has with its professional expertise?

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

Tom Gordon Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Juliet Campbell]

I have almost finished, so I will carry on.

If we give doctors the essentially impossible task of proving that death will inevitability occur in six months, there is a risk of an individual being advised to stop treatment, to accelerate them artificially into a serious or terminal state or speed it up to ensure their eligibility. As medical intervention is so key in the prognosis of a seriously ill patient, it makes no sense to me to use language that is not consistent with real-life medical experiences or reasonably within the scope of medical diagnosis.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

It is an honour to serve under your chairmanship, Mr Dowd. I speak in support of amendment 234, which is tabled in my name and seeks to ensure that people suffering from neurodegenerative conditions are not excluded from the dignity and autonomy that the Bill seeks to provide. The amendment would extend the eligibility period for those with neurodegenerative conditions from six months to 12 months—a simple yet crucial change that could alleviate needless suffering and ensure fairness in our approach to end of life care.

The intention of the amendment is to change the law to match that in five of the six Australian states. The wording mirrors that found in those jurisdictions. Conditions that would be affected by the change include motor neurone disease, Huntington’s disease, multiple system atrophy, progressive supranuclear palsy, Parkinson’s and many others. Although Alzheimer’s is a neuro-degenerative condition, those with Alzheimer’s would not be eligible for an assisted death should the amendment pass because they would not have the mental capacity.

[Daniel Francis]

Does the hon. Gentleman agree that those with early-stage dementia or Alzheimer’s could pass the mental capacity test in the Mental Capacity Act 2005?

[Tom Gordon]

They would need to come within the definition of a terminal illness. I will come that later in my speech.

We must recognise the reality of neurodegenerative diseases. There are other conditions where prognosis follows a clear trajectory. People with conditions such as MND and Parkinson’s experience a slow but relentless decline. Their suffering can be profound long before they meet the six-month prognosis requirement that is currently in the Bill.

Let us look at some real-life stories. Mary Kelly is a bright and sharp-witted woman from Middlesbrough. Diagnosed with Parkinson’s last year, Mary knows that she faces many years of deterioration. She said:

“It would make the world of difference to know that assisted dying was legal and available. I’d know if I’m not finding joy, I can end it peacefully. It would make the intervening years so much more peaceful, loving, and relaxed.”

Parkinson’s-related dementia affects a third of those with the condition. If Mary loses capacity before a doctor confirms her eligibility, she will be denied the very right that the Bill aims to uphold. If we do not amend the Bill, people like Mary will lose their autonomy precisely when they need it most.

We must also consider the experience of people like Phil Newby, who was diagnosed with MND a decade ago. Phil fought to challenge the UK’s ban on assisted dying, taking a case to the High Court in 2019. He is the last living person who took one of the court cases involving assisted dying. Phil knows that the uncertainty of prognosis leaves too many in limbo. He said:

“People with neurodegenerative diseases often suffer a cognitive decline in the later stages. Twelve months would give a much greater chance for a civilised death to those suffering from the most devastating illnesses.”

We must ensure that those voices are not ignored in this conversation.

Imagine a scenario in which someone with MND applies for an assisted death. They tell their friends, family and loved ones. They begin to make preparations, including signing the written declaration, but they cannot get approval until a doctor says they have six months left. They wait. Their condition gets worse. They suffer choking fits, have feeding tubes fitted, and experience a slow and cruel deterioration. Finally, they receive approval from the first doctor, but before they can get to a second doctor, they begin to lose capacity. They are still suffering. Their family know their clear and settled wish, but they have no chance of a second approval, and especially no chance of approval from a panel. They will be potentially consigned to a death of agony and pain, despite everyone knowing that it is not how they would like to die. Their family must watch on, helpless.

The loss of competency is one of the greatest fears for those with neurodegenerative conditions. The Bill currently states that a person must have full mental capacity at the time of their assisted death, which is an important safeguard. However, people who develop MND can have their decision making impaired, and around 50% experience some form of cognitive decline. In New Zealand, where there is a six-month limit, many people lose their decision-making capacity before they can proceed. By contrast, in Victoria in Australia, where there is a 12-month limit for neurodegenerative conditions, only 7% lose competency. If we do not amend the Bill, we risk condemning those people to a fate they fought to avoid.

We must also recognise the difficulty in predicting life expectancy for those with neurodegenerative conditions. Prognosis is not an exact science. I am fairly sure that everyone agrees on that—people have made those points repeatedly. The Court of Appeal has acknowledged that a six-month prognosis cannot be made with certainty for many terminal illnesses. That is one of the most difficult things that I have had to grasp as part of the Committee. To impose what could seem like an arbitrary threshold on those with unpredictable conditions is unfair and unnecessary.

Moreover, let us look at international examples. Many UK residents who have to travel to Switzerland for an assisted death do not have six months or less to live. If we end up with a six-month limit, we will still see people having to travel to Switzerland or other jurisdictions to ensure that they have access to an assisted death. I worry how people in this country would feel about that —particularly those families who might wish to accompany their loved ones on that journey, with the legal consequences that could follow.

Recent polling shows that two thirds of Brits support an amendment that would allow people with neuro-degenerative diseases access to an assisted death. We know that 85% of people living with multiple system atrophy who gave their views in an MSA Trust survey support such a change in the law. This is not a minor or niche concern. Every year, motor neurone disease alone kills 2,200 people in the UK, which is six people per day. Some 45% of people living with MND say they would consider an assisted death if the law changed. It is not a hypothetical scenario: these are real people, making real choices about how they wish to live and die.

My amendment would not overload the system. Experience from overseas tells us that jurisdictions such as Victoria and other Australian states already have a 12-month system for neurodegenerative conditions, and it works. New Zealand, which maintains a six-month limit, has seen people unable to qualify, and is looking at what it can do to ensure greater access. We must also listen to the written and oral evidence from expert witnesses. Professor Meredith Blake and Chloe Furst testified to the importance of a 12-month eligibility period, not just for fairness but for the practicality of allowing patients to navigate the process in time.

Everyone wants to see a Bill that is about dignity. If it is truly about that, we must ensure that it works for those who need it most. It is not about opening the floodgates or trying to expand the criteria. It is about ensuring equal access. From speaking to colleagues across the Committee, I know that a lot of thought and consideration has gone into this issue. With that in mind, I will not push the amendment to a vote, but it is important that the voices of people with neurodegenerative diseases are considered as part of the process.

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

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

I rise in support of amendment 234. I acknowledge the point made by the hon. Member for Harrogate and Knaresborough about not pushing it to a Division, but it is important to hear why it would benefit the Bill if it was agreed to. It would allow a terminally ill person with a neurodegenerative illness, disease or condition who has fewer than 12 months left to live—rather than six—the right to choose an assisted death. I speak as a humanist, because I am very alive to many members of the public, and some MPs, wanting a wider scope of eligibility to cover intolerable suffering. In fact, some want no timescales, and an amendment has been tabled for that. I believe that my hon. Friend the Member for Spen Valley, who introduced the Bill, has had people speak to her and say the Bill needs to go further.

Like all of us, I want to make this a good Act that will have strong safeguards while allowing people choice at the end of life, and I want it to command the support of the House. I reflected on whether we need to have such a wide definition to cover intolerable suffering, and I thought that a change to 12 months for those with neurodegenerative diseases would be a good way to reflect the breadth of voices we have heard in debates on the Bill. It is an appropriate compromise. One of the things we have seen over the course of our Committee debates is the real pulling apart and consideration of what this legislation will mean in practice.

As the hon. Member for Harrogate and Knaresborough set out so well, a 12-month timescale for those with neurodegenerative diseases would mean that people could make decisions while they still have mental capacity. As he rightly said, their condition would so often see a cognitive decline before six months. The Motor Neurone Disease Association—another organisation that supports people living with terminal neurodegenerative diseases—highlighted problems with the six-month criteria and the inequity that arises.

Again, I reference the testimony of medical practitioners from Australia, where some states have eligibility criteria for assisted dying that includes an illness, disease or condition that is expected to cause death within 12 months. It is out there in practice, so it is not a new concept. Professor Meredith Blake said in oral evidence:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 211, Q270.]

I will draw my remarks to a close, but there is a personal reason why it is important to me that we reflect on 12-month eligibility: the case of Diane Pretty. Diane Pretty was from Luton, albeit she lived in the neighbouring constituency, and some 25 years ago she was diagnosed with motor neurone disease. She tried to change the law then so that she could access assisted dying, such was the pain and suffering that she endured because of her terminal illness. What she said is fundamental and at the heart of what we are trying to do here, 25 years later:

“I want to have a quick death, without suffering, at home and surrounded by my family.”

In the end, Diane Pretty was not successful, and she died aged 43 on 11 May 2002. She did not have a choice. She could not choose the death she wanted. Much has been said about rushing the Bill, but that was over 20 years ago, so the debate has been going on for many years. That is why I speak in support of amendment 234, so that those with neurodegenerative terminal illnesses, whose death is reasonably expected within 12 months, can access assisted death.

[Rebecca Paul (Reigate) (Con)]

I will speak to amendments 9 and 10, which were tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool). Members will spot the trend: I have been speaking in favour of a lot of her amendments.

Amendments 9 and 10 would make sure the Bill does what it aims to do: ensure that assisted death is available only to those who are genuinely at the end of life. Under clause 2, a person is terminally ill if they have a prognosis of less than six months and if they have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

That wording gives rise to a risk of unintended cases meeting eligibility criteria.

In Oregon, conditions such as anorexia, diabetes, arthritis, HIV/AIDS and hernias have all qualified for assisted death. That is partly because the Oregon law uses the language of “irreversible”, just as the Bill says

“cannot be reversed by treatment”.

Conditions like diabetes arguably cannot ever be “reversed”, which suggests something more akin to “cured”; they can only be managed. The definition of terminal illness is now broader than it was ever intended to be.

[Tom Gordon]

Prior to being elected to Parliament, I worked for a type 1 diabetes charity—I feel like I have been saying that a lot recently. When we talk about diabetes, we often do not consider the fact that there are different types, including type 1, type 2 and gestational. They are not all akin, or the same. Furthermore, the NHS in its own language has referred to it as “a lifelong condition”, rather than a disease or anything that is terminal. How would the hon. Lady reflect on that?

--- Later in debate ---

[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.

[Tom Gordon]

I find this a little bit baffling, because we had a comprehensive list of witnesses that we were able to circulate in advance. The format in which those oral evidence sessions were held was really helpful and informative. We were able to ask questions, and as the hon. Member for Ipswich mentioned, we were interacting with people and families. We heard from Pat, who gave oral evidence about his sister who had to go to Dignitas. Again, it was not just a small figure; a number of people brought this issue up. Could the hon. Member reflect on that?

[Naz Shah]

The crux for me is that at Second Reading, when the Bill was voted on, many Members cited that one of the central planks to that debate at the time was the six-month prognosis. The amendment would increase that to 12 months. As I have said, my concerns are that we are only three months on from that conversation and we are already trying to expand the Bill, which is why I would not support the amendment. I have said quite a bit on amendment 234, so I will leave it.

I will now speak to amendment 48, which I tabled. Under the current wording of the Bill, a person is terminally ill if their death

“can reasonably be expected within 6 months.”

My amendment would change that so that for a person to be considered terminally ill their death would have to be

“expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.

One of the risks that confronts the Bill is that of misdiagnosis. That is not some remote possibility. Let me go into detail. As hon. Members know from the evidence brought before the Committee, prognosis is not a precise science. Even with physical illnesses, determining life expectancy is highly unreliable. Government data from the Department for Work and Pensions reveals that one in five people given six months to live are still alive after three years. A study spanning 16 years found that doctors wrongly predict how long terminally ill patients will survive in half of cases. Out of 6,495 patients who were predicted to die within six to 12 months, more than half—3,516, to be precise—lived longer than expected. If the Government themselves cannot accurately determine terminal illness for benefits, how can we rely on such predictions to justify ending lives?

Studies cited in written evidence submitted to the Committee have found that clinicians are routinely inconsistent and inaccurate in their prognostic assessments, often underestimating survival. Professor Katherine Sleeman, a palliative care specialist, underlined that point in her evidence to the Committee. Doctors face considerable difficulty in prognosing whether somebody is in the last six months of their life. Professor Sleeman cites studies based on large samples of patients for whom doctors prognosed life expectancy. The studies found that 47% of the patients whom they predicted to have six months to live in fact lived for longer than that—in some cases considerably longer.

I would argue that there is a danger in using the standard of prognosis currently in the Bill. The current research into doctors’ prognoses indicates that almost half of their estimates that a patient has six months to live are incorrect. We do not want people to choose assisted dying on the basis that they have only six months to live when a very high proportion of them will in fact live longer if they are not given assistance to die by taking a lethal drug or drugs.

My amendment would hold doctors to a higher standard of certainty. Under that measure, they would be explicitly held to prognosing that death would occur with “reasonable certainty” within six months, and that that would be true even if the patient underwent all recommended treatment.

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

Tom Gordon Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Danny Kruger]

I recognise that this is a vital point; I am not surprised that we keep returning to this important distinction. I do think that there is a vital distinction between accepting treatment and declining a treatment. In fact, the treatment proposed here is not a treatment at all—the British Medical Association specifies that it is not a medical treatment. The termination of life deliberately does not apply to a particular condition, whereas a ventilator, or any treatment that one might decline or withdraw, is specific to a particular condition or illness. There is a difference in purpose, even if the effect—which is death—is the same.

To the hon. Member’s point on whether the MCA is appropriate in cases of withdrawal of treatment; well, there we do seem to have a substantial body of clinical practice over many years, to which I am not aware of many objections. My non-expert view is that it is probably appropriate to continue with the MCA in those cases. I do not have an objection there and I am certainly not making that argument. It may well be that it is appropriate, and I am sure we will constantly review the applicability of that particular test in those circumstances. It might well be that some of the problems that I am identifying with the proposed law may also apply in cases of withdrawal of treatment—but I am not aware of that, because I do think they are substantially different. Even if it were perfectly acceptable to apply the MCA in cases of withdrawal of treatment, that does not mean it is appropriate in this case, because they are fundamentally different scenarios. I do not detect that I have satisfied the hon. Member, but it is always good to have the exchange.

I will conclude my challenge to the suggestion that the MCA is universally understood and properly applied. The Court of Protection case of Patricia, a patient with anorexia nervosa, has been referred to a number of times in the course of our debate. We heard evidence from a group of anorexia sufferers who wrote to the Committee to say:

“The judge in the Court of Protection case of Patricia…stated that he had changed his mind several times while considering the evidence. He then came to a different view on capacity from the treatment team. This single case exemplifies how complex the processes described under Clauses 7, 8 and 12 of the Bill in relation to assessment of capacity are likely to be”.

We are not talking about a straightforward process. It is clear from all the evidence we have had that there is a real problem with the way that the MCA would apply.

I want to make a rather obvious point, which is that when the MCA was debated and passed 20 years ago, assisted dying, or assisted suicide, was not on the table; it was not part of those considerations, as far as I am aware. It turns out that Dignity in Dying was on the case back in those days, although I think it was still called the Voluntary Euthanasia Society then. That group was conscious of what would come—I do not think that others were—and I detect that it is quite pleased now with the influence applied then to ensure that the presumption of capacity would be very useful one day when it came to passing an assisted dying law. It was not the intention of the House of Commons or of the Committee that considered that Bill that in fact they were establishing a test that would be applied in the case of assisting suicide and changing the terms of the Suicide Act. I am sure that if that had been the case, it would have been commented on, and I daresay the Mental Capacity Act would not be in its current form, or there would have been some addendum to that effect.

My hon. Friend the Member for Reigate referred to the very powerful evidence from lawyers, Baroness Hale and the Royal College of Psychiatrists about the challenge here. I want to quickly say, in support of amendment 322 in the name of the hon. Member for Bexleyheath and Crayford, that my hon. Friend the Member for Reigate made a powerful argument about impairment; it is striking that the MCA only applies when there are cases of impairment of, or disturbance in, the functioning of the mind or brain—I will not repeat the point she made, but I urge Members to reflect on it.

I will quote Ruth Hughes, a barrister specialising in mental capacity law and inheritance. This refers back to the point that my hon. Friend the Member for Reigate and I discussed in an earlier sitting about the clear opportunity that the Bill affords people to seek an assisted death for the sole purpose of saving their family money. Ruth Hughes says:

“If the…Bill is passed, then this will lead to some of the most vulnerable people dying for others’ financial gain. That is certain…Although in general I would, of course, accept the importance of the presumption of capacity, in relation to assisted dying, I consider that, the burden of proof for capacity should be reversed so that it is necessary to establish capacity to decide to die positively.”

Amendment 322 is tabled for that very obvious reason: there is a clear financial advantage for family members, and, I am afraid to say, there are many other distressing motivations that people might have that are not intended by the Bill’s promoter, the hon. Member for Spen Valley. It feels absolutely appropriate that we reverse the burden and have a much higher test of eligibility than that afforded by the Mental Capacity Act.

I want to make another point, although I do not know how hon. Members will feel about it because a lot of people do not accept that we are talking about suicide, even though it is in the terms in the Bill that we are amending the Suicide Act. The assumption of capacity in somebody taking their own life is what is proposed if we adopt clause 3: we are proposing that somebody has capacity if they end their own life. That implies directly that somebody who is standing on a window ledge or a bridge, about to commit suicide, is assumed to have capacity and to be making a rational decision, which other people should support. I say that directly, because there is a direct read-across with the whole topic of suicide prevention, which obviously we all strongly believe in. How can we say that somebody who is about to take their own life, unassisted, does not have capacity and is not making a settled and informed wish? In which case, why should we stop them or try to wrestle them back from the edge?

[Tom Gordon (Harrogate and Knaresborough) (LD)]

When people are in what is often termed a “crisis”, that would indicate that they are not in a situation where they have capacity. I do not see how the hon. Gentleman can think that it is reasonable to make a comparison between these two things; they are entirely different, and I am sure everyone here would broadly agree with that—I think, on this one, he is sort of on his own. Would the hon. Gentleman be able to offer any further insight into why he thinks that two wildly different situations are analogous—one is in a medical context where people have all the safeguards, and that layer of security and checking, and the other is someone who might be doing something in a moment of desperation?

[Danny Kruger]

The connection is explicitly in terms of the Bill. The Bill disapplies section 2 of the Suicide Act, which makes it illegal to assist somebody to commit suicide. It says that that section no longer applies. This Bill assists people to take their own life—I will not use the word “suicide” if people do not like it. There are other eligibility criteria: I totally acknowledge the hon. Member for Harrogate and Knaresborough pointing out that someone has to have a diagnosis of terminal illness, but that is not the point I am making. I am making the point that, under clause 3, we are saying that somebody who wants to take their own life has capacity, according to the very low bar of having a settled and informed wish. We are assuming capacity in the person who wants to end their own life. I suggest that that presents a real challenge to our national suicide prevention strategy—I will leave that point there, but I welcome any challenges to it.

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

Tom Gordon Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

“the Bill is entirely silent as to how the panel is to deal with the kind of issue exemplified by the Canadian case…where the patient’s partner intervened and obtained an interim injunction because of concerns about what was happening. What if the patient’s partner and relatives, excluded from participation in the panel process, discover, only after the panel has granted a certificate…facts of the kind which…prompted an eleventh-hour intervention by the Canadian judge? What are they to do? They cannot appeal. Can they somehow apply to the panel but which is now probably functus officio? Or can they apply to the Family Division and pray in aid the inherent jurisdiction? Or do they apply to the Administrative Court by way of judicial review? Who knows, and the Bill does not tell us.”

[Tom Gordon (Harrogate and Knaresborough) (LD)]

The hon. Lady has highlighted a few different legal cases from around the world; is she aware of the case currently going on in Spain, where a family member is challenging his daughter’s wish to have an assisted death? That challenge has been funded by religious groups—Christian groups—and is not actually going through the parent. He had the option and ability to raise the case, and it has then been funded and hijacked by outside groups. How would the hon. Lady see her amendment as helping to protect against that sort of thing?

[Rebecca Paul]

This is a really important opportunity to share all these examples. I have to be honest that I am not sure I see the relevance of how a case is funded, and I cannot speak on that person’s behalf. I am going to talk about some of the inequalities that come from this, because there will be people—we will come to this when we discuss judicial review—who will rely on legal aid to challenge a decision. If we do not get this right, we are in danger of creating a situation in which poor families cannot appeal and rich families can. That could give rise to the less than ideal situation the hon. Gentleman has raised. If we get this right and make sure that an appeals process is available on an equal basis to everyone in the country, that will prevent the kind of situation the hon. Gentleman has raised. I thank him for that, because he has helped to support the case for my amendment.

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

Tom Gordon Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Tom Gordon (Harrogate and Knaresborough) (LD)]

The hon. Gentleman will have to forgive me, because I am a relatively new MP and there are still bits of parliamentary procedure that I have not yet got my head round, but is it not the case that MPs will have a say on Report, when they can table amendments to take the Bill back to how it was? That point could therefore be debated on Report.

[Danny Kruger]

Of course that is correct: a small number of amendments will be selected for debate and vote on Report, and if somebody wants to table an amendment on this issue it might indeed make it through Mr Speaker’s selection, but the point of the Committee process is to consider the Bill that was passed on Second Reading and come back to the House with the Bill either unamended or amended. This is a very substantial change to the Bill that was presented and voted for on Second Reading. As I say, many Members supported this clause, no doubt including the hon. Gentleman.

--- Later in debate ---

[Sarah Sackman]

I want to reassure the right hon. Lady about the provisions that will apply even if her amendment is not accepted. The Welsh Language Act 1993 requires public bodies that are either named in the Act or named by Welsh Ministers, and which provide services to the public in Wales, to prepare a Welsh language scheme setting out the steps that the body will take in relation to the use of the Welsh language while providing those services. As I understand it, this approach is used all the time in legal proceedings in Wales.

In an instance in which a party wishes to speak in Welsh at the proceedings, section 22 of the 1993 Act will apply. Any party to the legal proceedings can express themselves in Welsh, at which point a Welsh interpreter would be commissioned to facilitate the discussion. That will happen. That will be the status quo—the backstop, if you like—without the amendment. Requiring all members of the panel to speak fluent Welsh would, in the Government’s view, be a significant operational challenge that could lead to undue delay at the end of life.

[Tom Gordon]

I speak only one language and it is definitely not Welsh, even though I did have a stint working in Wales. With any language, things can be lost in translation. When we are talking about something like assisted dying, does the Minister acknowledge that even with very skilled interpreters, there would have to be a suitable level of training to make sure that everything was fully thought through and there were no cracks—that nothing would slip through the net. That is not covered under the Welsh Language Act currently, and that is why the amendment has been tabled. Does she appreciate the severity of that?

[Sarah Sackman]

]The right hon. Member for Dwyfor Meirionnydd and the hon. Members for Chesham and Amersham and for Harrogate and Knaresborough have all put their case incredibly powerfully. In emphasising the operational difficulties that the Government have identified, I will make this point. The approach under section 22 of the Welsh Language Act is that the ability to speak in Welsh and have interpretation services is adopted in very serious legal proceedings indeed. The hon. Gentleman is right: we are talking about nuances that can determine civil or criminal liability; those are very serious issues indeed. I am not saying that that is quite as serious as matters of life or death, but getting right the sorts of things that interpreters need to ensure they are getting right, as well as vindicating the person’s ability to express themselves in their mother tongue or their preferred tongue, is something that happens already and would happen under the operation of this legislation.

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

Tom Gordon Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

Division 51

Ayes: 3

Noes: 18

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I beg to move amendment 350, in clause 18, page 12, line 34, at end insert—

“(d) subject to subsection (6A), provide additional assistance to administer the substance in the presence of an independent witness.

(6A) The coordinating doctor may provide the additional assistance under subsection (6)(d) when—

(a) the coordinating doctor is satisfied that the person is permanently and irreversibly unable to self-administer the substance due to—

(i) significant risk of choking as a result of dysphagia, or

(ii) the loss of use of the limbs; and

(b) the person has authorised that the additional assistance be provided.”

This amendment would define the eligibility criteria for those who are permanently and irreversibly unable to self-administer the substance and are therefore eligible for additional assistance to administer the substance.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 351, in clause 18, page 12, line 35, after “substance” insert

“or to authorise additional assistance to be provided”.

This amendment would ensure the decision to administer the approved substance remains with the person but would allow those who are unable to self-administer the substance to receive further assistance.

Amendment 352, in clause 18, page 12, line 40, at end insert

“, unless the criteria in subsection (6A) are met.”

This amendment would authorise the coordinating doctor to provide additional support with administration for those who are unable to self-administer the substance.

[Tom Gordon]

It is an honour to serve under your chairmanship, Sir Roger. I speak in support of this group of amendments, which address the issue of fairness and accessibility in the Bill. The amendments seek to ensure that those who are physically unable to self-administer the approved substance due to their condition are not excluded from the choice of an assisted death.

The principle at stake here is equity: making sure that this opportunity would be available to not only those with the physical ability to self-administer but all eligible individuals, regardless of their condition. The Motor Neurone Disease Association made it clear in its written evidence that conditions like motor neurone disease can be cruel, devastating and progressive, locking people inside their own failing bodies. More than 80% of people with MND lose the ability to speak. Many lose all limb function, leaving them unable to lift even a glass of water, let alone self-administer medication.

There is a common theme here that relates to a point I made in an earlier sitting, when we debated the period of time for eligibility. For these individuals, the Bill in its current form creates a barrier. It states that the final act of ingesting or administering an approved substance must be taken by the person themselves. For someone with advanced MND, that may simply not physically be possible. The MND Association’s evidence highlights that in other jurisdictions, such as Queensland in Australia, allowances have been made for people unable to swallow or self-administer. If we fail to include such provision here, we risk excluding some of the most vulnerable people or, even worse, creating a perverse incentive for them to seek an assisted death earlier, possibly abroad, when they may still have physical function.

These amendments are not about lowering safeguards in any way, shape or form. As we know, the Bill has robust safeguards, which these amendments would maintain. It would only be applicable in instances where doctors deem it necessary, and it would not be open to more than those with conditions restricting their ability to self-administer. If the Bill is about compassion, then we must ensure that that compassion extends to everyone; if it is about choice, then we should not deny that choice to those with severe physical limitations; and if it is about justice, then we should not allow injustice to be written into the law.

[Naz Shah (Bradford West) (Lab)]

I rise to oppose amendments 350 to 352, tabled by my hon. Friend the Member for Gedling (Michael Payne). They would allow the co-ordinating doctor to provide additional assistance to administer the substance in the presence of an independent witness, in some circumstances. Those circumstances would be when, as amendment 350 says, the doctor determines that the person is

“permanently and irreversibly unable to self-administer”

the lethal substance because of an inability to swallow or the loss of use of the limbs. The amendments do not spell out what the additional assistance would be, but I think it is reasonable to believe that it refers to the doctor injecting the lethal substance into a person’s circulatory system.

My hon. Friend’s amendments comes from genuine concern about the situation that some people may well find themselves in. Some people who might otherwise qualify for assisted dying under the Bill might be unable to swallow or inject the lethal drugs. We should all respect the feeling that lies behind the amendments, but we should reject them. If we pass them, we will have accepted that doctors can help people who have qualified for assisted dying to prepare to inject themselves with lethal drugs or swallow them. The Bill does not say that doctors can do that. I do not know whether the House would have voted for the Bill on Second Reading if it had, but that is beside the point—it was not part of the Bill. If we were ever to consider taking such a radical step, we should only do so after hearing as much evidence as possible on why and how this might be necessary. I urge the Committee to oppose the amendment.

--- Later in debate ---

[Tom Gordon]

The hon. Member mentioned that down the line the Bill could be changed through guidance. I do not think there would be any scope or ability to do that. Does he agree that that point might be a little bit beyond what we all think might be possible under the terms of guidance?

[Danny Kruger]

I hope the hon. Gentleman is right. Nevertheless, one of my concerns about the Bill is that we are leaving enormous areas of clinical practice, and regulated conduct for the professionals involved in assisted suicide, to be performed under guidance that is still to be set out and that it is the job of future Ministers to determine.

I pay tribute to the hon. Gentleman, because he has correctly identified a group of patients for whom the drafted Bill may present obstacles to the fulfilment of their wish for an assisted death. My belief is that the ability to assist will probably cover almost anybody who wants it and has found a doctor who wants to help them, but the hon. Gentleman is right that there are some groups for whom that might be more of a challenge than others. I think the answer we are going to get—it is one made by hon. Members in the debate already—is that technology will fix it, and I fear it will, because I think we are going to find ourselves in a world in which it is perfectly possible for the administration of death to be enabled through some kind of technological device, which somebody with the most limited physical mobility will nevertheless be able to activate.

I fear the insistence that we have on self-administration. Although we can all acknowledge, as referenced in the previous debate, the conceptual difference between administration and self-administration, we do have this idea that we are individuals cut off from each other and that there is an essential gap between us and other people. At the very end of life, though—in the moments that we are considering and legislating for—that distinction is void, because we are intimately connected with other people, as per the clauses that we are debating. I fear that we are going to find ourselves in a world in which a laptop will be set up and even a movement as small as the blink of an eyelid by the patient will be enough to trigger what will be called “self-administration” of the fatal dose.

I oppose this group of amendments, moved by the hon. Member for Harrogate and Knaresborough, because I do not believe in assisted suicide. I do not understand why other supporters of the Bill are not following the hon. Gentleman’s lead, and acknowledging that if we believe in autonomy and assisted suicide, of course we should enable patients to have the final act performed upon them, rather than insisting on this arbitrary distinction that it is possible to insist on self-administration in all cases.

--- Later in debate ---

[Kim Leadbeater]

I completely understand where these amendments are coming from. In many jurisdictions where assisted dying laws are in place, this would be an accepted part of the process. However, as I have said repeatedly, our Bill stands in its own right, and its safeguards are stronger than those anywhere else in the world. One of those safeguards is that the line cannot be crossed between a person shortening their own death by administering the drugs themselves and by having another person—in this case the doctor—do it for them.

While I am hugely sympathetic to the argument, that is a line that I do not believe the Bill should cross. I concur with the comments of my hon. Friend the Member for Bradford West about Second Reading and what the House voted for, and with those of the hon. Member for Reigate about medical profession levels, which we discussed this morning. I also agree with the Minister’s comments about the concept of an independent witness, and with the comments from the hon. Member for Solihull West and Shirley about the concept of additional assistance. On that basis, I will not be supporting the amendments.

[Tom Gordon]

I will keep it short and sweet. I had not intended to push the amendments to a vote and will not be doing so. A lot of important points have been raised. Irrespective of whether the amendments were going to be pushed to a vote or would have been successful, it is important that we listen to and take into account the voices of people with different diseases who might wish to access an assisted death. We must also take into account the evidence that organisations have submitted, because it is important that those voices are heard too. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

[Danny Kruger]

I beg to move amendment 435, in clause 18, page 13, line 6, at end insert—

“(9A) Where the procedure has failed, the coordinating doctor must escalate the care of the person by making the appropriate referral to emergency medical services.”

This amendment would require the doctor to escalate the care of the person in cases in which the procedure fails.

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

Tom Gordon Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Danny Kruger]

Let me come to the question of investigation by the police in due course, but I am not sure that the hon. Gentleman heard me clearly. I was not talking about offences that I think are rightly criminal; I was talking about offences that are not offences at all. Providing hospice care, helping people to relieve symptoms of pain or suffering and withdrawing life support are all perfectly permitted and legal in our system. The issue is that a significant proportion of the public think that those activities are what assisted dying entails. I do, however, recognise the point and the power of the testimony recited by the hon. Member for Spen Valley, to which I will come on in due course.

I understand that in order to make the Bill effective, an exception must be made to section 2 of the Suicide Act. Section 1 says that someone is allowed to commit suicide; section 2 says that one cannot help somebody else to do so. I agree that such an exception is necessary if we are to pass the Bill, but I cannot follow why clause 24(1) is needed. I will be grateful if the hon. Member for Spen Valley or the Minister can explain which other offences would necessarily be committed by a doctor properly carrying out his or her functions under the Bill. What other offences might be caught that require clause 24(1)?

Clause 18 will forbid a doctor from engaging in euthanasia. One criminal law from which an exemption is not necessary is the law on murder, yet ostensibly subsection (1) has no such limitation. I would be grateful for the Minister’s confirmation that subsection (1) will not afford a defence when the charge is murder. I presume that that is not the intention.

What about manslaughter, and particularly gross negligence manslaughter? Under the Bill, a pharmacist performing the function of prescribing or dispensing the legal drugs would be, to use the wording of amendment 504, “performing” a “function under this Act”. If a pharmacist makes a grossly negligent mistake and mislabels a drug, which is then sent to another patient who takes it and dies, that would quite clearly be gross negligence manslaughter. Can the Minister explain why clause 24(1), as amended by amendment 504, would not allow someone to benefit from an immunity in respect of gross negligence manslaughter? To be clear, I agree that if the pharmacist intentionally mislabelled the drug, he could not be described as

“performing any other function under this Act”,

so he would not have that defence. However, in a case where, in good faith, he had made a fatal and grossly negligent mistake, surely he would have been performing such a function, albeit performing it very badly.

Can the Minister clearly set out the reasoning to explain why there is no chance of such a defence under the clause? Of course the hon. Member for Spen Valley does not intend to exempt from criminal liability a pharmacist acting in that grossly negligent way, but I am trying to make sense of the drafting of the amendment. If there is any criminal offence, other than in the Suicide Act, that requires an exemption, it would be best to say so clearly in the Bill rather than relying on a catch-all term, as subsection (1) does.

I concur with the points made by my hon. Friend the Member for Reigate and will not repeat them, but I do find it interesting that the hon. Member for Spen Valley has chosen to retain the offence of assisting and encouraging suicide. This is because two arguments made by proponents of the Bill lead to the logical conclusion that the offence should either be repealed entirely or limited to self-conduct, as is the case in Switzerland. Let us look at the two arguments in turn.

The first argument relates to autonomy. If an autonomous individual with capacity decides to end their own life and requests the assistance of another person, why should that other person be criminalised? After all, that person is simply helping another person to do something to their own body that the law has not prohibited since 1961, so surely it is a violation of autonomy to criminalise such conduct of assisting in suicide.

Lord Mance, a former justice of the Supreme Court, put the matter as follows on Second Reading of the Meacher Bill in the other place:

“Suicide is decriminalised, yet assisting suicide remains criminal—probably a unique exception to the principle that you can only be an accomplice to an act that is itself criminal.”

It is bizarre that the act is not itself criminal but being an accomplice to it is. Lord Mance went on to say:

“If a person may choose freely to commit suicide, what justifies a refusal to allow them to obtain willing assistance?”—[Official Report, House of Lords, 22 October 2021; Vol. 815, c. 408.]

I believe in the value of a prohibition on assistance, but the logic of the argument from autonomy—that someone should be allowed to request assistance to help them to die—surely obviates the distinction. I do not see why we have kept section 2 at all, and I would be interested in hearing from the supporters of the Bill what the limiting principle is. Why do they think assisted suicide should remain a crime, despite its being a limitation on autonomy, outside the scheme created by the Bill? Why are we simply creating a scheme within the Bill?

The second argument given, which I think relates to the intervention from the hon. Member for Sunderland Central and to the point made by the hon. Member for Spen Valley, is based on the fact that the current law requires people to travel to Switzerland. The argument against the current system comes in three forms. One stresses the toll that it places on families to know that the people who assist have committed a criminal offence and could be investigated by the police, even though the chances of prosecution are remote. I fully recognise and share all the concerns among Members about the terrible distress faced by people who may in any way have assisted their loved one to take their own life.

The second objection to the status quo makes the point about the unfairness that the situation creates. The hon. Member for Liverpool Wavertree (Paula Barker) said on Second Reading:

“I do not want choice to be available only to those who can afford to pay. That is not just or equitable.”—[Official Report, 29 November 2024; Vol. 797, c. 1073.]

The suggestion is that to have to pay to go to Switzerland is a violation of equality.

The third is a constitutional argument. It is said that it is constitutionally improper for the Director of Public Prosecutions to have effectively decriminalised assisted suicide for people who travel to Switzerland. But the point I am trying to make is that under the Bill, anyone helping their relative to travel to Switzerland, or any other country, would still be committing an offence under section 2 of the Suicide Act.

Research from My Death, My Decision, a campaign group pushing for a wider Bill than the current one—it supports the Bill but clearly wants it to go further—has found that 50% of cases going to Dignitas would not be eligible under the Bill. It helps to make my point, which is that I am afraid that if the Bill were passed we would still have stories like the very moving testimony read out by the hon. Member for Spen Valley. In fact, as my hon. Friend the Member for Reigate said, there is a significant likelihood that there would be more prosecutions. If the Bill were enacted, the conclusion of the Crown Prosecution Service and the police might well be that, given the existence of an assisted dying regime within the UK, assisting one’s relative to go to Switzerland should be subject to a greater likelihood of prosecution. That is a legitimate concern.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

The point that the hon. Gentleman is making is actually one that I made yesterday. I appreciate that we are on entirely different sides of the debate, but that is exactly why I was talking about ensuring wider eligibility—the point he makes in relation to My Death, My Decision—and ensuring the provision of assistance for people who might have illnesses such as motor neurone disease. We have had to put a cut-off somewhere, and some people fall outside it, but does he accept that fundamentally this is about making sure that there are safeguards? That is the key point: that we should ensure safeguards. What the hon. Gentleman is talking about is exactly that.

[Danny Kruger]

I am grateful. With great respect to other members of the Committee, I think the hon. Gentleman is the most honest advocate of assisted dying among us, because he genuinely recognises that autonomy demands the widest possible range of eligibility. It might be that other Members feel that we have the balance exactly right. I recognise the force of his argument that if we are going to introduce a new human right, it is very difficult to circumscribe its boundaries. He himself thinks that there should be some boundaries: he proposed an amendment that specified 12 months, and he thinks that only certain people should be able to ask someone else to perform assisted death to them. Nevertheless, he is acknowledging that if we believe in autonomy, the Bill would not satisfy some people.

I think it would be intellectually coherent and more logical for proponents of the Bill to want to repeal section 2 of the Suicide Act, and I do not understand why they are not doing so. We could certainly continue to insist on prohibitions against any form of coercion, persuasion or inducement to take one’s own life, but if somebody is clearly in their right mind and wants to receive assistance to kill themselves, that is the principle of the Bill. It would be neater if we amended the Suicide Act accordingly.

The fact that proponents do not want to do so suggests that they see some value in the law and that they consider that that value trumps concerns about autonomy and the impact of the law on family members of someone who wishes to travel to Switzerland to end their life. I agree that there are such principles—namely, the intrinsic value of life and the protection of the vulnerable—but I do not see why proponents of the Bill consider that such principles trump autonomy when it comes to terminally ill adults in England.

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

Tom Gordon Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Kit Malthouse]

That is an extraordinary claim to make against doctors.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I am just trying to wrap my head around the argument. We already know that integrated care boards and other commissioning bodies have incentives given to them when they commission services, so it would be in their interests to diagnose or produce a demand for a service in a particular area. There is already an analogous situation within the NHS; I do not see how that is any different.

[Sarah Olney]

I thank my hon. Friend for his intervention, but those incentives are not about creating profits that make money for individuals. They are about directing the way that resources are allocated to ensure that a broader range of health outcomes are achieved. When I talk about a profit incentive, it is an entirely different kind of incentive from the one he has just raised.