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

Tom Gordon Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Juliet Campbell]

I have almost finished, so I will carry on.

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

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

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

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

[Daniel Francis]

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

[Tom Gordon]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[Rebecca Paul (Reigate) (Con)]

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

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

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

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

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

“cannot be reversed by treatment”.

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

[Tom Gordon]

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

--- Later in debate ---

[Naz Shah]

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

[Tom Gordon]

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

[Naz Shah]

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

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

“can reasonably be expected within 6 months.”

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

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

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

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

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

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