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 (Eleventh sitting)

Tom Gordon Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Naz Shah]

It is very much in support of that, and I want to tease out what my hon. Friend just said, which is important. One conversation we are having is about being a burden—my hon. Friend referred to the evidence that we heard—but another side to that is that when people feel like a burden, somebody benefits from that. That benefit is what the amendment teases out. That is what I want to understand.

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

I completely understand where the hon. Lady is coming from, but this is the conflict between someone feeling like a burden because of their own personal choice and autonomy, and how those might impact other people in their surroundings. Does she accept that among the reasons that many people might want to access an assisted death is that they do not want to lose that autonomy? That is not necessarily anything to do with feeling like a burden on other people; it is about their own choice.

--- Later in debate ---

[Tom Gordon]

Can the hon. Member elaborate on what the amendment would add that previous amendments we have debated would not?

[Naz Shah]

The issue for us in the conversation on this amendment is that we have talked about coercion, undue pressure, undue influence, encouragement and all that, but we have not talked about the benefit to others. It is simply a different conversation; it is about understanding that a person has been coerced and so on, but also for what reason. What is the benefit to others? That is my understanding of the amendment, and that is why I am speaking to and supporting it.

Unfortunately, the Bill as it stands does not have all the necessary safeguards for all those who see themselves as burdens to others, and that is why I support the amendment.

--- Later in debate ---

[Kit Malthouse]

I understand what the hon. Lady is saying, but I am afraid that the amendments do not say that. Even if they did, there would be some difficulty, because you are asking for a further level of complexity in what should be, we hope, a decision made between doctor and patient, in private and confidential circumstances where sensitivity is needed and where we are asking medics to tease out motivations from individuals. I hate to use a pejorative word like “woolly”, but I find the lack of precision in the language troubling. I think it will create yet more complexity and jeopardy for doctors and lawyers.

[Tom Gordon]

I just wondered whether the right hon. Member shares my concerns that the amendment would end up in the territory of legislators and parliamentarians almost trying to act as thought police, when we should be respecting the autonomy of people in the decisions they make.

[Kit Malthouse]

I am grateful to the hon. Gentleman because he brings me to my second point, which is exactly that—autonomy. We heard in oral evidence, and it comes through from some of the written evidence, that people’s motivations for seeking an assisted death are often a mixture—a cocktail—of different reasons. Some are about pain, and some are about trauma, for them and for others, but the overarching motivation is always this notion of control. What people seem to be most concerned about is, “If I contemplate my end, I want to have some kind of say, as I get to the end, about what it will be like. That end may be a variety of different outcomes.”

As my hon. Friend the Member for Solihull West and Shirley, or any of the doctors in the room, will know, if someone is dying of bowel cancer, any number of things may kill them. Palliative care is able to help with some of them, but not others. In my experience, the notion in people’s minds is that, as they approach that point, they just want the reassurance that they can control it and have the option, if they so wish. That is often their primary motivation. As the hon. Member for Bradford West said, there may be ancillary results and reasons why people want that control, but the primary purpose is control.

--- Later in debate ---

[Danny Kruger]

We want to ensure that people decide for their own sake—I will give way in a moment; this is a good opportunity to make this point. The hon. Member for Ashford referred to the Mental Capacity Act, which we have retained as the basis of the capacity test. The Bill would introduce a version of the best interests consideration, which, as we discussed yesterday, will not be triggered in the Bill because that consideration is not triggered if there is capacity—and if there is not capacity, things do not proceed.

I think it is appropriate that the people making the decision have some consideration of their best interests. I understand that we want to make this all about autonomy, so perhaps a better description is a self-interest consideration. That is what the amendment requires doctors and, later, the judges to conclude: is the person making the decision in their own interests, for their own sake? Are they doing it for themselves? If they are doing it for other people, that is problematic.

[Tom Gordon]

I want to make two points that reflect on the oral evidence that we heard. I cannot remember exactly which witness it was, but someone said something along the lines of there being something quite British about feeling a bit like a burden. That point really stuck with me, because we say it all the time and that was the point made by the person giving evidence. When we talk about the amendment in the context of someone acting for their own sake or for the benefit of others and whether that means that they feel like a burden or otherwise, I think that is something to bear in mind. Might the hon. Member reflect on the fact that people who die natural deaths also feel like a burden at the end of their life? So when we talk about stats pertaining to that, how do we decipher between the two?

[Danny Kruger]

I am very conscious that people feel like a burden at the end of their life. It is quite right that at the moment the system says, “No, you are not. You have value. You might feel a burden, but we want to sustain your life until its natural end. If you want to withdraw or decline treatment, that is your autonomous choice, but we do not recognise you as a burden.” It is very important that the British state does not tell people or confirm to people that they are a burden, which is what we would do in the Bill.

To the point that the British people are very self-effacing, I should say that I suspect we would be at extreme risk from this law. I think many people would indeed feel like a burden. If we pass this law, we are explicitly saying, “Yes, you may well be a burden and it might well be right for you to seek an assisted death.” My right hon. Friend the Member for Braintree, who tabled the amendment, makes the powerful point that a right to die should not become a duty to die. Nobody wants that. Nevertheless, the implication of a law that confirms that people may seek to get the state’s help to kill themselves—not for their own sake but because they feel a burden to others—is incredibly dangerous for our society and for our culture. I would be very concerned if we proceeded with it.

I will now conclude on the amendment before quickly talking about pain. It addresses the motivation of doing things for one’s own sake. I do not underestimate the difficulties. My right hon. Friend the Member for North West Hampshire has stated a number of them at least, as have other Members.

Implementing this safeguard will be difficult, but the fact is that the Bill’s sponsors have already put enormous faith in doctors and judges, or other experts, to detect external coercion and make all sorts of judgments—to ferret around in people’s minds and in their lives to understand what they are doing. We have to consider how best to implement this safeguard, but at the moment the Bill does not even say that asking for an assisted death for other people is something that should be protected against. That is wrong, and it is right that we make the amendment.

I will proceed quickly to a few points about the amendments in the name of my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson), which specify that the purpose of seeking an assisted death must be the avoidance of pain. They would make the Bill honest. The point has been made repeatedly by advocates in the media and in Parliament, including in our evidence sessions, that the reason why we need an assisted dying law is that so many people die terribly. My right hon. Friend the Member for North West Hampshire has referred to some of that today, and he did so very powerfully on Second Reading too.

Sir Nicholas Mostyn made a fairly unarguable case that if we are honest about what we are trying to do here, it is unclear why we have a period of prognosis as a qualifying factor: why should people have to be within six months of their death in order to qualify if we are concerned about the avoidance of suffering? If the logic of the Bill’s proponents and the argument for it is followed through, of course it should be only about the avoidance of pain. I recognise that “suffering” is a more complicated word, but I do not agree with my right hon. Friend that pain is too difficult to determine. The motivation of avoiding pain is straightforward. It should be simply about pain, and unless someone is a full-blown ethical egoist who believes there should be no restrictions on someone seeking the assistance of others to take their life—

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 (Ninth sitting)

Tom Gordon Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Naz Shah]

I absolutely share those concerns, which is why I pressed the issue to a vote. As I have explained to my hon. Friend the Member for Spen Valley, I am grateful that the Royal College of Psychiatrists gave evidence. It said that the Mental Capacity Act

“is not sufficient for the purposes of this Bill”.

In oral evidence, Professor Jamilla Hussain, an expert in palliative care and health inequalities, highlighted an inequity in assessment using the Mental Capacity Act. She said that she does not think that

“the Mental Capacity Act and safeguarding training are fit for purpose. For something like assisted dying, we need a higher bar—we need to reduce the variability in practice.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]

My hon. Friend the Member for Penistone and Stocksbridge mentioned the process in the Bill being repeated eight times, but I want to bring us back to the issue of capacity in relation to coercion. The Royal College of Psychiatrists said:

“In any assessment of capacity, we must also consider whether a person is making the request because they consider that they are a burden or because they do not consider that they have access to effective treatments or good-quality palliative care. At a population level, palliative care, social care and mental health service provision may impact the demand”

for an assisted dying service. Although I appreciate that we will debate this in greater detail later, on clauses relating to coercion, it relates to the issue of capacity. In her evidence to the Committee, Chelsea Roff, a specialist in eating disorders, said:

“One thing I would like to highlight in our study is that all 60 people who died”

by assisted dying after suffering from anorexia, who were mostly young women,

“were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.

I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]

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

I completely agree with the point the hon. Lady is making about mental capacity applying to eating disorders, but would that not be better debated in relation to defining an eating disorder as a terminal illness, rather than in regard to mental capacity?

[Naz Shah]

I will be speaking to the issue in relation to terminal illness, because it relates to my amendment in another grouping. The reason I am making this point now is that it also impacts on capacity. When we are assessing capacity—again, this talks to the point—the truth is that nobody in this Bill Committee or otherwise can tell me that the Mental Capacity Act has been applied to the question, “Would you like assisted dying?”

--- Later in debate ---

[Naz Shah]

It would be if we were making treatment equitable, but if we apply the test of legality, and this is about pain—we have already seen the amendments tabled by the hon. Member for Harrogate and Knaresborough, which would widen the scope from six months to 12 months—where do we draw the line in terms of equity and legality? The Bill is open to a lot of legal challenges, and if we want to go down that route, there would be plenty of them.

[Tom Gordon]

There is a fundamental difference between trying to ensure that people have equal access to assisted dying and prohibiting a specific group or category. Does the hon. Member understand that?

[Naz Shah]

I understand that perfectly well. On the idea of not giving people assisted dying, as the Bill stands, the category also includes people who decide to stop eating or taking insulin and people who decide not to go on dialysis. It includes a whole host of illnesses. If we are talking about the legal challenges, which my hon. Friend the Member for Stroud started with, the legal challenges for the Bill are vast as it stands.

--- Later in debate ---

[Naz Shah]

The idea that it is the fundamental denial of a human right is not quite correct. We are talking about the denial of a provision in a Bill that has not come into law. It is a potential legal position; it is not necessarily a human right yet. If the Bill comes into force, at that point it becomes an option that could be denied. There are many prisoners. Prison serves many purposes, one of which is to reform. There will be many prisoners who go in there and get a degree in criminality because they are surrounded by other prisoners. There are people who make choices.

In the first four weeks we should not have the conversation around assisted death in any case. I have tabled an amendment to that effect and will speak to it when we come to it. In the meantime, a person has an added layer of pressure if they are in prison. It does not mean that everybody is necessarily vulnerable from a starting position. I agree that there may be prisoners who are not vulnerable, but there is an added pressure if somebody is homeless or in prison, not having family or security, that would no doubt compound their mental health. Whether that is a slight or a large impact is for somebody else to assess, but as it is I support the amendment.

[Tom Gordon]

I can understand where the hon. Lady is coming from, but I wonder whether she has any specific examples of groups such as people who are homeless or prisoners having other rights denied to them. That is what I am struggling with, although I can understand her point about people being vulnerable. The only other example that strikes me is that people who are incarcerated are unable to vote. I cannot think of any other instance where people would have any particular right removed from them. Does the hon. Lady have any other examples or comparable situations she can share to help us?

[Naz Shah]

I do not have any comparable situations; this is uncharted territory.

--- Later in debate ---

[Tom Gordon]

The hon. Member makes a valid point about ensuring that there is documentary evidence. Does he not feel that that will be covered at a later point in the Bill when we debate the amendments on training, and specifically on ensuring a coherent way in which all the doctors and people in the process set about recording?

[Danny Kruger]

The hon. Gentleman is a great stickler for doing things in the right order. I am grateful to him for calling us to order on that point again. I dare say that he is absolutely right. All these issues are rather interwoven through the Bill.

I will finish on a point about the role of the Court of Appeal. A rejected application—although not an approved application, I am sorry to say—can be appealed under clause 12. For the Court of Appeal’s review to be substantive, it must surely be able to review the evidence as fully as possible on what happened throughout the terminally ill person’s application.

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

Tom Gordon Excerpts

Tuesday 11th February 2025 Public Bill Committees

[Naz Shah]

I absolutely share those concerns, which is why I pressed the issue to a vote. As I have explained to my hon. Friend the Member for Spen Valley, I am grateful that the Royal College of Psychiatrists gave evidence. It said that the Mental Capacity Act

“is not sufficient for the purposes of this Bill”.

In oral evidence, Professor Jamilla Hussain, an expert in palliative care and health inequalities, highlighted an inequity in assessment using the Mental Capacity Act. She said that she does not think that

“the Mental Capacity Act and safeguarding training are fit for purpose. For something like assisted dying, we need a higher bar—we need to reduce the variability in practice.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]

My hon. Friend the Member for Penistone and Stocksbridge mentioned the process in the Bill being repeated eight times, but I want to bring us back to the issue of capacity in relation to coercion. The Royal College of Psychiatrists said:

“In any assessment of capacity, we must also consider whether a person is making the request because they consider that they are a burden or because they do not consider that they have access to effective treatments or good-quality palliative care. At a population level, palliative care, social care and mental health service provision may impact the demand”

for an assisted dying service. Although I appreciate that we will debate this in greater detail later, on clauses relating to coercion, it relates to the issue of capacity. In her evidence to the Committee, Chelsea Roff, a specialist in eating disorders, said:

“One thing I would like to highlight in our study is that all 60 people who died”

by assisted dying after suffering from anorexia, who were mostly young women,

“were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.

I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]

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

I completely agree with the point the hon. Lady is making about mental capacity applying to eating disorders, but would that not be better debated in relation to defining an eating disorder as a terminal illness, rather than in regard to mental capacity?

[Naz Shah]

I will be speaking to the issue in relation to terminal illness, because it relates to my amendment in another grouping. The reason I am making this point now is that it also impacts on capacity. When we are assessing capacity—again, this talks to the point—the truth is that nobody in this Bill Committee or otherwise can tell me that the Mental Capacity Act has been applied to the question, “Would you like assisted dying?”

--- Later in debate ---

[Naz Shah]

It would be if we were making treatment equitable, but if we apply the test of legality, and this is about pain—we have already seen the amendments tabled by the hon. Member for Harrogate and Knaresborough, which would widen the scope from six months to 12 months—where do we draw the line in terms of equity and legality? The Bill is open to a lot of legal challenges, and if we want to go down that route, there would be plenty of them.

[Tom Gordon]

There is a fundamental difference between trying to ensure that people have equal access to assisted dying and prohibiting a specific group or category. Does the hon. Member understand that?

[Naz Shah]

I understand that perfectly well. On the idea of not giving people assisted dying, as the Bill stands, the category also includes people who decide to stop eating or taking insulin and people who decide not to go on dialysis. It includes a whole host of illnesses. If we are talking about the legal challenges, which my hon. Friend the Member for Stroud started with, the legal challenges for the Bill are vast as it stands.

--- Later in debate ---

[Naz Shah]

The idea that it is the fundamental denial of a human right is not quite correct. We are talking about the denial of a provision in a Bill that has not come into law. It is a potential legal position; it is not necessarily a human right yet. If the Bill comes into force, at that point it becomes an option that could be denied. There are many prisoners. Prison serves many purposes, one of which is to reform. There will be many prisoners who go in there and get a degree in criminality because they are surrounded by other prisoners. There are people who make choices.

In the first four weeks we should not have the conversation around assisted death in any case. I have tabled an amendment to that effect and will speak to it when we come to it. In the meantime, a person has an added layer of pressure if they are in prison. It does not mean that everybody is necessarily vulnerable from a starting position. I agree that there may be prisoners who are not vulnerable, but there is an added pressure if somebody is homeless or in prison, not having family or security, that would no doubt compound their mental health. Whether that is a slight or a large impact is for somebody else to assess, but as it is I support the amendment.

[Tom Gordon]

I can understand where the hon. Lady is coming from, but I wonder whether she has any specific examples of groups such as people who are homeless or prisoners having other rights denied to them. That is what I am struggling with, although I can understand her point about people being vulnerable. The only other example that strikes me is that people who are incarcerated are unable to vote. I cannot think of any other instance where people would have any particular right removed from them. Does the hon. Lady have any other examples or comparable situations she can share to help us?

[Naz Shah]

I do not have any comparable situations; this is uncharted territory.

--- Later in debate ---

[Tom Gordon]

The hon. Member makes a valid point about ensuring that there is documentary evidence. Does he not feel that that will be covered at a later point in the Bill when we debate the amendments on training, and specifically on ensuring a coherent way in which all the doctors and people in the process set about recording?

[Danny Kruger]

The hon. Gentleman is a great stickler for doing things in the right order. I am grateful to him for calling us to order on that point again. I dare say that he is absolutely right. All these issues are rather interwoven through the Bill.

I will finish on a point about the role of the Court of Appeal. A rejected application—although not an approved application, I am sorry to say—can be appealed under clause 12. For the Court of Appeal’s review to be substantive, it must surely be able to review the evidence as fully as possible on what happened throughout the terminally ill person’s application.

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 (Seventh sitting)

Tom Gordon Excerpts

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 (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 (Fifth sitting)

Tom Gordon Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Order. I have to take a question from another Member—Tom Gordon.

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

Q I have a question for Professor Esmail. One of the things that we have talked about with different witnesses is whether we should have a wider panel of people looking at these decisions; that might encompass people from social care, medical or legal backgrounds. I think that that would make sure that some of the issues that we have talked about would, hopefully, be more robustly picked up on. Do you think that by moving towards that in the Bill—were we to have assisted dying—it might provide a more holistic approach to end of life and to giving people that option? How might that influence and change palliative care and other interactions?

Professor Esmail: I feel that this Bill will make things much better, in the sense that when you have a conversation with someone, they could sometimes have even as a reassurance, “Look, if things get really bad, I have this option available.” That is important, and it can certainly help in that respect.

In terms of holistic care, currently when I look after dying people I never do it on my own; I am with district nurses, Macmillan nurses, or on call to a palliative care consultant. There is already a team of people looking after dying people. Where it works well, it works very well. We should not be burdened by the fact that everyone complains about how terrible everything is. I would say that probably 95% of the time, it is okay. There are issues with social care and so on, but I think that palliative care—the drugs people need, how often they get them and who gives them—works very well and it works in a multidisciplinary way. I think that this legislation will allow a much more open discussion and proper monitoring. It will improve training, guidance and everything else. People say that it will enhance palliative care, and that is what I think will happen.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Q I have a question for Professor Esmail. We heard from the Australian witnesses this morning that there was a period of implementation after legislation of 18 months. Do you think we should have a period of implementation, and what should that comprise?

Professor Esmail: I think we will need to have one, because we will need to train people up and put in place all these things. You do not want to pass a Bill that a lot of people cannot access. It will require thought about how we plan this. As with any service, it is much better to think about it and ensure that we cover all options. As I said, the worst thing would be to pass a Bill and not have the right things in place. For example, the training will take a while. I am not saying that it will take 18 months to train someone, but we are talking about training groups of doctors and nurses, and ensuring that the pathways are correct and that the legal system can deal with the requests. That will clearly take time, and we will need a lot of systems thinking about how it all fits together. You cannot specify, and I do not know how good this country is at this, but that is what should happen. It can sometimes happen very effectively and quickly.

--- Later in debate ---

[Danny Kruger]

Q Dr Graham, on the points about article 14, I very much appreciate and welcome your belief in parliamentary sovereignty, and the suggestion that the courts should listen to Parliament—most of us agree with you on that—but it is a big hope. They do have the opportunity, and have demonstrated their power, to object to statute on the basis of the ECHR. As you said, they could allow assisted dying, and indeed discrimination within an assisted dying law, if there was some justification for it.

You are presumably aware of Lord Neuberger’s judgment in the Nicklinson case. He said that there was

“significantly more justification in assisting people to die”

who have long-term chronic conditions and are going to suffer for years than for people who are on the verge of death. I also point out Lord Bingham’s judgment in the Pretty case, which suggested there would be discrimination against people who are unable to perform the final act themselves. Surely, then, there is a very strong case to be made under the ECHR that the Bill would be discriminatory. I would value your response on that, and maybe from Lord Sumption too, if he wants to come in.

My second question is to you both, on article 2. If it were to be allowed, the safeguards that would be required —I shall quote from the Mortier case, which you know well—would be that

“medical professionals are complying with the free, informed, explicit and unambiguous decision of their patients”

without pressure and abuse. Do you therefore accept that this comes down not just to the safeguards in theory, but to how they actually operate in practice? We have heard very serious concerns on that front. Are you confident that the courts would allow this? That is, of course, assuming this is an NHS service, because it could be that they decide it should not be.

Dr Graham: The takeaway message from cases like Nicklinson and others, both at the domestic level and the European level, is that this is a decision for politicians and a decision for Parliament—you mentioned the sovereignty of Parliament—regardless of what Lord Bingham and Lord Neuberger might think personally about or, I suppose, obiter about the relationship between discrimination law and the provisions that were looked at in those cases. For the reasons that I set out earlier, on the justification question, judges in our jurisdiction are heavily deferential towards the decision of our elected Parliament. In any future challenge, and there probably will be a challenge—we do not know, but there is nothing to stop someone from bringing one—the courts will adopt the same line of thinking.

I agree with you completely that the theory and the practice must both be taken into account when assessing whether there are adequate safeguards for the purpose of article 2. All I want to note is that in the Mortier case, which you mentioned—in which the Belgian legislation and its compatibility with article 2 were challenged before the Strasbourg Court—the Court found that there were sufficient safeguards in that legislation. That is despite the fact that if we put the Belgian legislation that the Court was looking at and this piece of legislation side by side, this legislation contains, at least in theory, more and stronger safeguards.

The Belgian legislation did not have a waiting period; did not require judicial approval; was not restricted to a terminal illness; and was not restricted to adults only. Yet the European Court said that there were sufficient safeguards for the purposes of article 2. At least from a precedent-based perspective, I think there is a strong argument for saying yes, the Bill complies with both article 14 and with article 2.

Lord Sumption: I have read Dr Graham’s evidence, and obviously have listened to him this afternoon. I agree with it in its entirety. Dr Graham points out the additional layer of safeguarding in the form of clause 12, but I do not understand him to be suggesting that without clause 12 the Act, if the Bill became an Act, would be defective on human rights grounds.

I also agree with Dr Graham on the question of the likely approach of the courts. The courts would be dealing with legislation that reflected a balance between two very powerful but contradictory moral instincts, both of them fundamental to our legal and social culture. That is not a context in which the courts are going to feel that they ought to be putting their own oar in.

I would also point out that, since the Nicklinson case, there have been a number of decisions of the Supreme Court—two in particular: the Shamima Begum case and the Child Poverty Action Group case on the two-child limit—in which the Supreme Court has expressly said that in issues of this kind, the courts should not devise policies of their own, independent of policies that can be discerned in parliamentary legislation. It is therefore even less likely now that the courts would intervene on human rights grounds than it was at the time of Nicklinson.

[Tom Gordon]

Q My questions are to Dr Graham and Lord Sumption. The Bill, in its current form, has several opportunities for confirming capacity and whether the people who want to take up assisted dying have the capacity to do so; there are a number of safeguards and steps within it. That is more than is typically required for any other end-of-life decisions. I wondered whether you would comment on that. Is the Bill safe enough in its current form? If not, what other steps could be added?

Dr Graham: The only thing I would feel comfortable saying is that, yes, I agree with you that the Bill does contain further safeguards, more safeguards, than some of the other legislation in European countries. The legislation in those countries has been held to be compatible with the right to life and with other rights under the European convention. From a pure human rights perspective, which is all I feel qualified to comment on, I think you are on very safe ground.

Lord Sumption: I take exactly the same view. We must all be conscious of the fact that coercion, even when it is overtly applied, is extraordinarily difficult to detect: the kind that Baroness Falkner described a few moments ago as the subtle pressures that old and disabled people—in fact, people who are very sick generally—will feel without the need for any pressure. That spontaneous feeling of pressure is, I would have thought, practically impossible to detect. We have to live with the limitations of what human beings can do. In the end, I have come down in favour of the principle behind the Bill, but I regard it as an extremely difficult balance to draw—notably, for that reason.

[Sarah Olney]

Q Baroness Falkner, do you consider that in its current form the Bill upholds the rights of all the different groups whose rights are protected under the Equality Act 2010?

Baroness Falkner: Several human rights are engaged in the Bill: article 2 has been discussed; article 3 relates to inhumane and degrading treatment; article 8 is the right to privacy; article 9 is about freedom of thought, conscience and religion; and of course there is article 14, which has been discussed. They are all engaged at different levels of the Bill, and they are important and serious considerations. We are not clear, at this point in time, that the reservations we have about them can be resolved without further changes to the Bill.

--- Later in debate ---

[Tom Gordon]

Q I would like to direct my question to Dr Neerkin. We have heard from lots of different jurisdictions where assisted dying is commonplace now. In those areas, the actual uptake is very small. That is in places where they have a lot less in the way of safeguards than we do in this Bill. Can you comment on the fact that we are talking about a very small group of people for whom palliative care would not be enough anyway? This option might give those people peace of mind and enable them to have a good period of life while they have it, and then choose to leave on their terms.

The point I am trying to get to is, we keep talking about big populations and groups, but in your professional experience, how wide or narrow does the Bill need to be? Do the safeguards in it not already restrict it to a very small group of people whose needs would not necessarily be met by palliative care?

Dr Neerkin: I agree. People who request assisted dying are a tiny proportion—we see that in other jurisdictions. Of those that request it, the number that go through with it is even smaller. As I said earlier, people want to live—people do not want to die. But what people do not want to have is a prolonged death where they are suffering—they want control. In my experience, the number of those that actually really wish for it, ask for it, and would potentially go through with it, is small.

[Dr Tidball]

Q This is a question for Dr Neerkin. That was extremely helpful. We know that Tōtara hospice in New Zealand—one of the largest hospices there—has said that it does not think that assisted dying and palliative care are counter to each other, and that a system can work where they are running side by side. Can you touch on, first, any evidence we have from countries that have adopted assisted dying that demonstrates that marginalised groups are seeking it much more regularly than those with more economic resources; and, secondly, choice and the ability for assisted dying to give greater dignity to individuals seeking that choice?

Dr Neerkin: Some of that question, at least the first part, would have been better posed to the people from Australia and America this morning, who probably have more details on it. I have looked extensively at the data from Oregon, and there is not a skew towards the elderly, the disabled, people of different minorities or people in poverty. I do not think there is a skew. You actually tend to find that people are younger and from wealthier and more educated backgrounds. Looking at it from that side of things, they are probably more knowledgeable in that background. Could you repeat the second part of your question?