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

Debate between Tom Gordon and Rebecca Paul

Committee stage
Wednesday 12th March 2025 Public Bill Committees

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

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

[Rebecca Paul]

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

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

Debate between Tom Gordon and Rebecca Paul

Committee stage
Tuesday 25th February 2025 Public Bill Committees

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

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

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

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

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

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

“Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 211, Q270.]

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

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

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

[Rebecca Paul (Reigate) (Con)]

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

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

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

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

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

“cannot be reversed by treatment”.

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

[Tom Gordon]

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

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

Debate between Tom Gordon and Rebecca Paul

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.