Terminally Ill Adults (End of Life) Bill

Tom Gordon Excerpts

Friday 16th May 2025 Commons Chamber

[Madam Deputy Speaker (Judith Cummins)]

Before I call the next speaker, I will be asking Members after him to limit their comments to eight minutes.

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

I start by thanking the hon. Member for Spen Valley (Kim Leadbeater) for introducing the Bill and for giving me the opportunity to serve on the Bill Committee.

I rise to speak in favour of my amendment 4, which goes to the very heart of what the Bill is all about: dignity, compassion and choice at the end of life.

[Pippa Heylings (South Cambridgeshire) (LD)]

My hon. Friend is right to point out that compassion and fairness for those who are terminally ill are rightly at the heart of the Bill. Does he agree with my constituents who would like to see it extended to those terminally ill with motor neurone disease and neurodegenerative disorders, to give them choice and dignity, too, by extending the eligibility period? [Interruption.]

[Tom Gordon]

I thank my hon. Friend for her intervention. It was really interesting how the debate was conducted on Second Reading and in Committee, and how we were meant to be having that respectful debate, and it is disappointing to hear comments from opponents already.

Amendment 4 seeks a simple yet crucial change to extend the eligibility period for those with neurodegenerative conditions, from six months to 12 months, something that is already reflected in legislation in five of six Australian states. My amendment mirrors the wording used in that legislation, and it is based not on conjecture but on medical reality, international precedent and, most importantly, the lived experiences of those facing some of the most harrowing diseases imaginable.

Amendment 4 would not expand the Bill’s reach beyond terminal conditions; it simply acknowledges that for people with conditions such as MND and other neurodegenerative diseases, the current six-month prognosis requirement creates a cruel and unnecessary barrier.

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

I am sure that the House will be interested to note that the jurisdiction of Scotland, as well as the Crown dependencies of the Isle of Man and Jersey, have variations that are different from what has been discussed. Will the hon. Member join me in commiserating with the family of Iola Dorkins, a campaigner I mentioned back in November? She died of motor neurone disease on her birthday last week. Let us remember that we are doing this for real people who are undergoing real suffering at the end of life.

[Tom Gordon]

The right hon. Member makes a pertinent point about other jurisdictions and the different Bills and conversations around them that they have. I tabled my amendment in order to ensure that we have that debate in this place. I extend my condolences to the family.

These are progressive, irreversible diseases; their trajectory is well understood; and their toll is devastating. People with MND, for instance, often face a relentless loss of muscle function, leaving them unable to move, speak or even swallow. Before they reach the six-month prognosis threshold, they may already be enduring intolerable suffering. Crucially, many will lose the capacity necessary to make an application before they ever qualify.

The Bill already contains the most robust protections of any assisted dying Bill in the world, with mandatory capacity assessments, a multi-step approval process and a clear requirement for terminal illness. We have gone further than any other jurisdiction in terms of safeguards.

[Mr Angus MacDonald (Inverness, Skye and West Ross-shire) (LD)]

May I posit the idea that what my hon. Friend is suggesting, and what the previous intervention was suggesting, is a slippery slope? It is an enormous concern, and I suspect that in a few years’ time we will see a very different Bill.

[Tom Gordon]

I thank my hon. Friend for his intervention. The amendment is designed to stop our having a conversation about eligibility after this Bill. I want to see a Bill that stops the argument about a slippery slope and gives equitable access to people with all health conditions.

[David Smith]

Will the hon. Member give way?

[Tom Gordon]

I will make a little progress.

We have gone further than any other jurisdiction in terms of safeguards. Why, then, if we are satisfied that our safeguards are robust, are we excluding those with neurodegenerative diseases—people who are terminally ill—on the basis of an arbitrary timeframe? We say that the Bill is about choice, but for someone who has already lost the ability to speak or move and who knows that they are on a rapid decline, what choice do we offer? Are we saying, “Wait until your prognosis hits six months, if a doctor can say so with confidence, and then hope that you will still have the cognitive ability to apply”?

[Dr Scott Arthur (Edinburgh South West) (Lab)]

Will the hon. Member give way?

[Tom Gordon]

I will make progress.

Let me speak to the reality of my amendment with a story from a constituent who does not wish to be named. She wrote to me about her brother, who died at age 58 from MND. Prior to his diagnosis, he was strong, healthy and, as she put it, a lot of fun. He was a great family man, but it was dreadful to watch his illness progress, and it had a profound impact on the family. It took 18 months of effort, worry and deep distress before he finally passed away. He wanted to have control over the time of his death, knowing what was to come. My constituent wrote:

“A difficult subject for most of us to contemplate, but in his particular case the possibility of assisted dying would have given him much comfort.”

[Lola McEvoy]

Will the hon. Member give way?

[Tom Gordon]

I will make a little progress, as I was in the middle of a quotation. It continues:

“Unless you are actually affected by something as desperate as MND, you cannot understand what it really means to have such an option.”

My constituent is right. We can debate legal safeguards, ethics and precedents all day in this Chamber, but for those who are living with devastating diseases, this is not theoretical; it is personal, it is urgent and it is real.

[Christine Jardine]

This is a very personal one for me, because much of my motivation for supporting the Bill comes from having watched a member of my family die of motor neurone disease. Although perhaps it would have been preferable if motor neurone disease and other degenerative diseases could have been included, I accept that we do not want to go down the slippery slope. However, there is a difference between extending the Bill to degenerative diseases such as motor neurone disease and extending it to other conditions. Perhaps we could consider supporting that, because I would not want anyone to go through what I witnessed, without the choice to end it without going through more pain.

[Tom Gordon]

I thank my hon. Friend for that powerful and compelling intervention.

We risk creating a two-tier system. We say that we want to fix the status quo because we know that it is not working, but if the Bill forces people such as my constituent’s brother to consider dying earlier—or worse, to have to travel abroad for an assisted death in another far-off, distant country under different laws—then have we really changed anything? We may be telling people with cancer that they can access a dignified death under the Bill, but also telling those with neurodegenerative conditions such as MND that they must either endure prolonged suffering or act prematurely, just to stay ahead of a ticking clock. That is not justice, in my view, and it is certainly not compassion.

International experience backs up the amendment. In Victoria, where a 12-month limit applies to neurodegenerative conditions, only 7% of applicants lose capacity before they can proceed. In New Zealand, where the six-month threshold remains, many people are excluded because they lose that ability too soon. We know that MND takes more than 2,000 lives a year in the UK alone—six people every single day. I ask colleagues not to turn away from those people; not to dismiss their fears, their hopes or their pleas for fairness.

[Several hon. Members rose—]

--- Later in debate ---

[Tom Gordon]

I will make some progress.

The amendment is not about eroding the careful work that the Bill Committee has done to expand the rigorous safeguards already in the Bill; it is about ensuring that some people with the cruellest terminal conditions are not left out of the options that we are seeking to give others.

[David Smith]

Will the hon. Gentleman give way?

[Tom Gordon]

I am bringing my remarks to a close.

If we believe in dignity, let us ensure it is a dignity that includes everyone; if we believe in autonomy, let us not deny it to those who may lose their voice tomorrow; and if we believe in compassion, let it be a compassion that recognises the lived reality of all terminal illnesses and does not consign those with MND to the status quo.

[Florence Eshalomi]

Mindful of time and of the need to allow other colleagues to speak, I have been carefully to ensure that my speech is short. I will therefore not be taking any interventions.

I voted against the Bill on Second Reading, on the grounds that there were inadequate safeguards against the coercion of minority communities. That was based on my belief that, if we are to legislate for something as serious as the end of someone’s life, then the bar that the legislation must reach in order for it to be deemed safe needs to be much higher than it is in other areas. In the time since, I have followed closely the scrutiny that the Bill has received at Committee and on Report. I had hoped that my concerns would be addressed, but I am sad to say that I am even more worried now than I was then.

Before getting to the new clauses and amendments that would provide important safeguards, I want to state again that I do not think the Bill is the appropriate mechanism for a national decision of this magnitude to be made, and ultimately, any decision on it should be led by the Government and the clear will of this House, not on promises made to people without an elected mandate.

I pay tribute to the work of tireless campaigners on a number of important issues in relation to the scrutiny of this Bill since Second Reading. That work resulted in many amendments and new clauses being tabled by Members from across the House to attempt to strengthen the protections for at-risk groups. As I alluded to, I sadly do not have enough time to speak to all of those that I support, but I am grateful for the efforts of the many who have led and spoken in this debate.

I will speak to amendment 16, which stands in my name. It would make it explicit in clause 28 that there would be no obligation on any care home or hospice that is regulated by the Care Quality Commission or the Care Inspectorate Wales to provide assisted dying on its premises. I understand that my hon. Friend the Member for Spen Valley (Kim Leadbeater) has tabled new clause 10 to replace clause 28 and thereby ensure that there is no obligation on anyone to provide assistance. While I welcome the expansion of protection that that provides to practitioners who do not wish to provide assistance, I do not believe that it is comprehensive.

Dr Jamilla Hussain, a palliative care consultant working predominantly with ethnic minority communities in Bradford, gave oral evidence to the Bill Committee. She said:

“I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, ‘We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 187, Q245.]

Heartbreakingly, she also said:

“Almost every week, one of the first things I have to reassure patients about is that I cannot legally do anything to shorten their life. This is front and centre of the fear for those patients and we see it all the time.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 190, Q247.]

This is not an academic or theoretical risk. Are we really prepared to sideline those unheard voices and risk embedding further inequalities in healthcare as we legislate?

We are all elected to this place to elevate the voices of those who feel that they are furthest away from power. If we are to achieve that, we must make decisions that honour their experiences, and legislate to protect them, but if hospices are unable to opt out of a collective policy of providing assisted dying, the people who already feel ignored by healthcare systems are more likely to fear accessing the care that they need at the end of their life. That would create further unnecessary suffering, and I know that we are all united in wanting to avoid that.

I do not doubt the good intentions of any Members choosing to support this Bill, and I thank the many constituents, on both sides of the debate, who have contacted me. However, we politicians have to be clear that Members with valid concerns about this Bill are raising them not because of some ideology or religious belief, but because we recognise that if this Bill passes, it may impact everyone, not just those who wish to die. It is not wrong or scaremongering to consider wider family life, relationships in which there are feelings of burden or coercion, and vulnerable women and people from the BME community at the end of their life. It is not wrong or scaremongering for us politicians, as we continue to receive correspondence from our constituents about the broken state of our NHS and social care, to think carefully about a Bill that may alter the relationship between doctors and their patients.

It is frankly insulting to disabled people and hard-working professionals up and down the country to have their many valid concerns about this Bill dismissed as religious beliefs. Sadly, I have come to the conclusion that instead of giving a universal right to dignity in death, this Bill would reinforce the health inequalities that deprive so many from our vulnerable communities of dignity in life. I urge Members to keep that at the forefront of their mind as we vote today, and to reject this Bill.