Terminally Ill Adults (End of Life) Bill

Rachel Hopkins Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

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

I am glad to have the opportunity to speak in this hugely significant debate, and as a co-sponsor of the Bill to support my hon. Friend the Member for Spen Valley (Kim Leadbeater) in advocating choice at the end of life. Since I came into this place five years ago I have spoken many times about assisted dying and the desperate need for reform of the law, and I believe this Bill is a landmark opportunity to change the status quo once for all, so that mentally competent terminally ill adults have the right to choose a peaceful, safe and compassionate death.

We hold a responsibility in this place to legislate for all people across the United Kingdom—for society. The overwhelming opinion of the public is clear. A poll conducted earlier this year found that 75% of people would support a change in the law to make it legal for terminally ill adults to access assisted dying in the UK.

The current blanket ban on assisted dying forces terminally ill people to suffer against their will as they near the end of their life, while loved ones watch on helplessly. Some choose to avoid that fate and seek assisted death abroad, but that comes at a substantial cost of around £15,000 to travel to Switzerland for that purpose. That highlights systemic inequality, whereby only those with the necessary financial means have access to a choice over the timing and manner of their death.

[Dr Arthur]

Will the hon. Lady give way?

[Rachel Hopkins]

I will continue, I am afraid.

As a humanist, I believe we have but one life and that we should live it well and make it meaningful. I believe that individuals should have autonomy in life. Similarly, I believe that at the end of life every person should have agency and the right to die with dignity and to a safe and painless death, on their own terms, subject of course to strong safeguards. I believe that the Bill contains stringent safeguards.

Although my humanist beliefs have contributed to my view, personal experience when young sparked my initial questions about the manner in which our lives end. My grandfather, Harold Hopkins, was an optical physicist and is remembered as one of the most innovative scientists of modern times. Many of his inventions are in daily use throughout the world, including zoom lenses, coherent fibre-optics and rod-lens endoscopes, which revolutionised modern keyhole surgery.

Unfortunately, my grandfather was not immune to the grip of a cruel terminal illness, and he sadly suffered greatly in the final weeks of his life, while battling prostate and secondary cancers, rendered blind during his final days, which was a cruel irony for a man who did so much to advance optics. But it was the haunted look on my father’s face when he arrived home having spent the final few days with Harold, who was in terrible pain and suffering before he finally died, that had a lasting impression on me. Surely, in a modern society, if we are able to live a good life, we must be able to have a good death.

My grandfather was just one of many who have faced such a fate. I have heard from many constituents and from other families—many who are here today—who have shared their own stories of watching their loved ones die in unnecessary pain and indignity. While many have raised concerns around the need for better funded and supported palliative care services in our country, I reiterate the point that the Bill does not represent an either/or proposal.

As my hon. Friend the Member for Spen Valley has said over the past few weeks, at its core this legislation is about not ending life, but shortening death. This is fundamentally an issue of dignity, compassion and humanity, and I encourage all Members across the House to use their power as elected representatives to alleviate the needless pain of thousands of individuals and their families by taking the first step towards providing choice at the end of life by legalising assisted dying.

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

Rachel Hopkins Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

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

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

Q My question, directed at Chloe, is about the practical application of access to doctors for patients, as suggested in the proposed legislation, and how doctors have those conversations with patients—particularly, when it comes to geriatricians, older patients. We heard from somebody yesterday who said that there were concerns around how older people were treated, and the potential risk of elder abuse. I would be interested in the practical application of those conversations, in your experience.

Dr Furst: First up, a patient has to specifically ask me about voluntary assisted dying. They have got to use words that really imply that that is what they want. I will often ask any relatives to leave so that I can have a conversation just with them, to try and reduce the risk of coercion, and then invite the family back.

One of the practical things that I often ask the patient is when they started thinking about this. Is it something that they have always considered should be a right, or is it more of a new-found belief given their current suffering? I want to understand what their current suffering is. I ask specifically whether they feel a burden on their family and friends. It is an hour-plus long conversation to really understand them and their suffering.

Again, I make sure they understand all the other treatment options available to them and what good palliative care looks like. I will often be prescribing other medications as part of that good palliative care—opiates and anxiolytics. As a geriatrician, I am also making sure that their mood is also addressed, and that this is not a reactive depression. I am really doing a holistic and comprehensive geriatric assessment as part of that voluntary assisted dying assessment as well.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Q This question is for Dr Furst and Professor Blake. Many of us on the Committee are committed to the need to protect disabled people and to ensuring that the Bill has as many safeguards in as possible. We heard evidence yesterday that anorexia may qualify under assisted dying laws in other jurisdictions. Have there been any cases of people with anorexia accessing assisted dying in Australia, and in your view do the respective laws across Australia allow for that? Secondly, are there any lessons that we can learn on building in safeguards in relation to those with learning disabilities?

Dr Furst: All around Australia, mental health as the primary terminal illness is excluded, so anorexia by definition is excluded. I have had a patient come to me with anorexia as their terminal illness requesting voluntary assisted dying. It is a relatively easy assessment because they do not meet the standard criteria, and I was able to explain to them that they were not eligible. But it opens the opportunity to have good, in-depth conversations with them about what they are going through.

I cannot talk to the learning disabilities question, other than to say that every time a patient comes to me the assessment is directed to the patient. I saw a patient today with motor neurone disease who is on continuous bi-level positive airway pressure and is using Eyegaze. The assessment and conversations I have with her are based around what she can do for me. I have had patients who have been able to put a thumb up and down, and I have had trachy patients. I cannot necessarily talk about learning disabilities, but as a holistic practitioner you are trying to make sure that the patient in front of you understands everything and is given the full opportunity to express their wishes.

Professor Blake: I would just say—

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

Rachel Hopkins Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

I thank my right hon. Friend for that very useful contribution. First, I am saying “suicide” because we are talking about the Suicide Act, and I cannot perform this role without naming the actual bit of legislation that we are talking about. I know people here are a little bit squeamish about the word “suicide”, but it has a clear legal meaning.

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

Will the hon. Member give way?

[Rebecca Paul]

Not yet; I am finishing my point. It has a clear legal meaning, and we must not put the blinkers on. I would suggest to Members that if they have an issue with the word “suicide”, they remember that this will actually result in the end of someone’s life. We must not be squeamish about using correct and accurate terminology in what we describe.

The second point made by my right hon. Friend the Member for North West Hampshire is a really good point: it is a fine line and it is really difficult. I have proposed this amendment not because I want “encouragement” specifically to be in the Bill, but because the encouragement of suicide is already a crime. I am being logical and taking what is already a criminal offence under the Suicide Act. If we do not include it in the Bill, it means that someone can commit a criminal offence against a victim, and that does not preclude the victim from being eligible for assisted dying, so I am suggesting a very logical amendment. My right hon. Friend makes a great point, but if we have an issue with the word “encouragement”, we need to take that up with the drafters of the Suicide Act, which was long before my time in 1961.

[Rebecca Paul]

As ever, the hon. Lady so eloquently makes her point and I completely agree. I am not a lawyer but, given that the Suicide Act made the encouragement of suicide a criminal offence back in 1961, I imagine there is quite a lot of case law that would help define where that line is drawn on encouragement, but I would refer to better qualified people than myself.

[Rachel Hopkins]

I reassure the hon. Lady that her sweeping statement about us all being squeamish when talking about suicide may not be accurate. I would put it back to her: how squeamish is she when talking about assisted death, because we are actually talking about two separate things here? I reiterate the point made by the right hon. Member for North West Hampshire: a healthy person taking their own life by suicide is different from a terminally ill person, who is facing their death, ending their life by shortening their death. Would she accept that point?

[Rebecca Paul]

I am talking in legal terms, because we must use the right language. Under the law, I think what the hon. Lady said is not correct. I stand to be corrected by someone who is a lawyer, but given that we are amending the Suicide Act, I think technically an assisted death is the assistance of a suicide. I understand that the hon. Lady would like to reframe that and use different words to describe it. Maybe that could be done, but right now, under the law, it would be suicide.

[Rachel Hopkins]

If the Bill becomes law it would be a different situation, which is exactly what we are scrutinising.

[Rebecca Paul]

My interpretation is that it would not.

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

Rachel Hopkins Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[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.

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

Rachel Hopkins Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Naz Shah]

Amendment 290 was tabled by my hon. Friend the Member for York Central (Rachael Maskell). Clarity is needed on who a medical practitioner is. With the regulation of physician associates, there was much unease from the British Medical Association and others on the role and function of the new profession. Although I do not want to debate the merit of this today, it is clear that involvement in the assisted dying process requires someone of significant experience to support a patient while undertaking complex assessments and co-ordinating their care between specialists and others.

In some jurisdictions, we have heard that clinicians have extensive clinical experience, whereas they do not in others. Therefore, being able to determine the level of experience and competencies of the medical practitioner is important to ensure that the patient is receiving care from someone who has significant practice expertise. A doctor in training, whether as a specialist or general practitioner, although making very specific clinical decisions, should not be deemed as having the experience, competencies or breath of experience for the purposes of this process. An associate practitioner should also not be deemed to reach these thresholds. Amendment 290 would therefore show the public that the person who would act as the co-ordinating doctor held such experience, and that there was no doubt in their standing to register for such a role. The public can already be confused on the exact status of the clinician they are under or indeed the profession itself. Including this safeguard would ensure that the patient’s interests are upheld.

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

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

I rise to speak in support of amendment 185, in the name of the hon. Member for Spen Valley, the Bill’s promoter, regarding training requirements that need to be made by regulation. It would place a duty on the Secretary of State to make regulations about training qualifications and experience required in order to act as a co-ordinating doctor. Similarly, amendment 186 says that the regulations should specifically include training relating to the assessment of capacity and assessing whether a person is being coerced or pressured by any other person. Proposed new subsection (3C), introduced by amendment 186, would make provision that

“the required training, qualifications or experience is to be determined by a person specified in the regulations.”

In making those regulations, reflection of expertise is vital. We heard from many experts who gave us evidence about the importance of training, development and mentorship, which we would expect to see covered in the regulations. Placing those requirements in regulations would mean that they could be developed through consultation with experts and stakeholders, after gaining a wide range of feedback. It would also future-proof the requirement of any training to be developed and strengthened through future experience.

As part of the safeguards in the Bill, the key principles around assessing capacity and potential coercion are really important. I am therefore minded to press the hon. Member for Spen Valley also to support amendment 20, in the name of my hon. Friend the Member for Lowestoft (Jess Asato), which states:

“Regulations under subsection (3)(a) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”

That would provide further clarity, and would further strengthen training on assessing coercion in all senses of the word as part of the safeguards, which many Members, even in the earlier debates, have said that it is so important that they see. I agree, and I hope that the promoter of the Bill will support amendment 20.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I rise to speak to the amendments in my name—namely, new clause 12 and amendments 336, 337 and 335. Yesterday, we spoke about the evidence we received from the British Medical Association. I accept that there is some crossover between my amendments and the amendments of the Bill’s promoter, my hon. Friend the Member for Spen Valley, on training.

The British Medical Association stated, with regard to my amendments:

“We strongly urge MPs to support these amendments which would define the ‘training’ explicitly in the Bill as specialised training to provide assisted dying, undertaken by those who opt in…We have been vocal that the Bill should be based on an opt-in model…during the Committee’s oral evidence sessions. Reinforcing this, we believe NC12 and Amendments 335-337 would make two important aspects of this provision in the Bill clearer:

1. That providing assisted dying is not, and would not in the future, be expected of all doctors—the Bill’s current all-encompassing reference simply to ‘training’ does not preclude this training being prescribed as standard general medical training via the regulations, in which case it would apply to all doctors and make the opt-in redundant. Specifying that it is ‘specialised’ training on the face of the Bill, and making clear that there is no obligation on doctors to undergo the training, would safeguard the opt-in model in the Bill’s first principles.

2. That only those who undergo specialised, tailored training on assisted dying could provide the service – during the oral evidence sessions, there has been much discussion about the importance of specialised training for those who opt in to carry out the service. Specialised training for those providing the service is essential for doctors and provides additional protection and safeguards for patients—it should be explicitly referenced in the Bill.”

We heard in our oral evidence sessions from others, including Dr Ahmedzai, on the need for training. He said:

“I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 69, Q82.]

I now turn to two amendments in my name: amendment 340 and amendment (a) to amendment 186. Both amendments relate to training for those with learning disabilities and autism. We had a similar discussion on a previous clause, and I know that further amendments are likely to be tabled on the matter, but as I said yesterday, they are not currently on the amendment paper.

I heard and welcome what my hon. Friend the Member for Luton South and South Bedfordshire has said about amendment 20. Putting that training in the Bill is hugely important, and I believe the same is true in relation to training for those with learning disabilities and autism, as set out in to amendments 340 and amendment (a) to amendment 186, particularly given my concerns and those of others about whether we end up with clause 3 relating to the Mental Capacity Act 2005.

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

Rachel Hopkins Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Rebecca Paul]

I thank the hon. Member for his very good questions. I suggest that it be asked twice, because it makes a lot of sense to ensure that the patient is given the chance to really explain what is driving their decision. It is the simplest of questions, but it is amazing what can sometimes come out of the simplest question.

I return to the safeguard against coercion. In a sense, this is not a new safeguard; rather, it confirms and bolsters the other safeguards in the Bill, which are there to explore the reasons for assisted dying. Asking why will help doctors to better understand what is driving a patient’s decision and to give that patient an opportunity to validate that they are truly eligible. It is the simplest of questions, driving the most significant conversation that a doctor and patient can have. I hope that hon. Members will support my amendment.

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

It is a pleasure to serve under your chairship, Sir Roger. I rise to speak in support of amendments 201, 422 and 423, which stand in the name of my hon. Friend the Member for Spen Valley, and against amendment 468.

On amendment 201, a point was made earlier about the relevance of records. It was mentioned that it might well not be relevant to look at a childhood tonsillectomy. However, I wish to speak in slightly more specific terms, in support of women and their reproductive rights, and to highlight the risk of unconscious bias if all records are to be looked at.

If a woman had a termination in her teenage years, that will be highly irrelevant to her decision, many decades later, whether to choose an assisted death. Relevance is very important, because there will be a high level of record keeping in the process. It is not only the doctors working with the patient on the assessment who will read the records and reports; ultimately, it will also be the panel. I make the point again that so many parts of a patient’s medical records are highly irrelevant to the diagnosis and prognosis of a terminal illness, and to the six months under the eligibility criteria. Indeed, there is a risk of unconscious bias in the judgment. It is about the professionalism of the doctor in respect of understanding the records that are relevant for the process.

[Danny Kruger]

Will the hon. Lady give way?

[Rachel Hopkins]

I will continue, if I may.

I turn to amendments 422 and 423. The importance of a rounded, holistic assessment and discussion with the patient has been pointed out in many of our discussions, as has the importance of the multidisciplinary team and the other health and care professionals who support the patient with health and social care. That would all have to be recorded—the conversations that have been had, and why the assessing doctors and other health and social care professionals were involved. In oral evidence, many doctors in other jurisdictions said that they worked in multidisciplinary teams. The amendment would firm that up. It is about being clearer, because the clarity that the amendments provide would make for a stronger process.

On amendment 468, the hon. Member for Reigate pointed out that it asks a very simple question. However, I return to the point about the professionalism of the doctors involved in the process, who will be working within the legal requirement under the Bill that the individual have a clear, settled and informed wish. The doctors will have to check individuals’ eligibility under the requirements, for example that they are over 18 and have a terminal illness with a six-month prognosis. The doctors will use their expertise and professionalism, and that of the multidisciplinary team, to make assessments about coercion. They have strong rules about assessing for capacity.

The requirement to ask why someone wants an assisted death is a requirement to police the conversation that the doctor has with their patient. Setting it out in primary legislation would lead to a tick-box exercise, with doctors saying, “You’ve told me a number of times already in our conversation that I’ve been having with you, but I’m sorry: I have to officially ask this question and tick the box.” That could lead to an insensitive conversation and relationship between the relevant people in the process.

To a certain degree, the patient may think, “So what? Do I have to tell you why? It is none of your business why I want to pursue this legal course of action down the line.” I appreciate where the hon. Member for Reigate is coming from, but with the best of intentions, her amendment would actually lessen the individual’s autonomy and their right to choose what if the Bill passes will be a legal course of action. I am content that the stringent training that will be required for any of the assessing healthcare professionals will enable a good holistic conversation so that good judgments can be made. Adding this extra sentence would detract from that, so I cannot support the amendment.

--- Later in debate ---

[Naz Shah]

I thank my hon. Friend for his intervention. There is a medical model and a social model of intervention. If I walk into a GP surgery with a really bad headache, I am prescribed paracetamol. If the headache gets worse, I am prescribed something stronger—maybe co-codamol or codeine. Doctors are really busy. We have had to add another 40,000 appointments just for people to get through systems, so we know how hard it is to get a GP appointment.

If the person who turns up at the GP’s with a headache is usually quite healthy, the doctor might not take a minute to ask about what has actually happened. If I say, “I have a headache because I am banging my head against the wall—I have that much stress”, that is a whole different conversation. Having that conversation with the patient—probing a little more—is, for me, very important from a holistic point of view.

[Rachel Hopkins]

I want to check that my hon. Friend was not implying that I had not thought deeply—for more than a minute–in the course of making my comments earlier.

[Naz Shah]

No, that was not my implication. When referring to my hon. Friend’s remarks, I was speaking about a patient perhaps saying “It is none of your business” or that my hon. Friend was talking just about autonomy.

[Rachel Hopkins]

I am grateful to my hon. Friend for reiterating those points. Does she accept that it is a patient’s right to say, “It’s none of your business” in the course of the conversation?

[Naz Shah]

I absolutely accept that it is the patient’s right to say, “It’s none of your business”, with the really clear caveat that they could well be a vulnerable patient. They might say that it was none of the doctor’s business, and that doctor might then not be able to explore the other things going on with that patient. That is why, for me, this does not wash.

The point that I am trying to make is that, in the course of a normal consultation, it is presumed that every doctor will know their patient and be able to have these conversations. In most cases, they probably will because we have amazing doctors; I have amazing relationships with my doctors. But does that mean that the doctors will ask that one question: “Why?” That is the crux of the whole Bill.

[Naz Shah]

That opens up a whole different debate for me. Some clinicians will not sign up to this process and some will. That is a whole different debate, but I take the point that there has to be a reason.

We talk about the option for referral to palliative care. I have previously moved amendments that would have meant a referral, without the option; however, when considering that option, a doctor needs to understand that if a patient says, “I do not have to explain myself—full stop”, or, “I do not want to talk about palliative care”, that should raise alarm bells. If a doctor says, “You’ve got this terminal illness. These are the options—let me spell them out for you. You have the option of referral to palliative care and the option of these drugs, so why do you want to kill yourself?”, and the patient turns around and says, “It’s none of your business”—

[Rachel Hopkins]

Will my hon. Friend give way?

[Naz Shah]

Sorry, I will just finish my point.

From a common sense perspective—I am not medically qualified—that situation should make me, as a human being, want to understand more. As a human being, I would like to understand whether something else was going on, such as anger towards—

[Naz Shah]

Sorry, I will not give way until I have finished my point.

I would like those conversations to be at least explored, which is why I support the amendment.

[Rachel Hopkins]

The Bill already sets out a number of things that a doctor has to assure themselves of, with regard to coercion and capacity. They would do that having had a significant amount of training to establish, in the round, after consulting others, that one way or another the legal requirements have been met. The “Why?” question appears to me to bring in a judgmental element—

[Kit Malthouse (North West Hampshire) (Con)]

Subjective.

[Rachel Hopkins]

Indeed: subjective, as the right hon. Gentleman said. That is the point that I am trying to get at. There is an objective assessment, which is wholly appropriate, but a subjective assessment would lead down a different route and muddy the objective assessment.

[Naz Shah]

I absolutely see where my hon. Friend is coming from and appreciate her concern, but we will have to agree to disagree as we have a difference of opinion. A subjective assessment might reveal that something else is going on for that patient.

I hate to put myself in this position, but imagine I have just received a diagnosis and I am going to die within six months. I could have a whole load of anger about that happening to me and I could say, “I don’t want this. I don’t want to talk about it. It’s none of your business. I’m angry—this is what I want.” At that point, does the doctor stop? In most cases, my hon. Friend the Member for Luton South and South Bedfordshire is absolutely right, but in some cases she might not be. I might want to shut the conversation down because I am angry or because other things are going on in my head and I do not want to explain. Amendment 468 would allow the doctor, from a compassionate point of view, to have another conversation with the patient.

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

Rachel Hopkins Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Naz Shah]

It is an honour to follow the hon. Member for Reigate, who takes the record for being on her feet the longest in this Committee.

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

Oh no—that’s yours!

[Naz Shah]

She beats my record for sure. I assure the Committee that my comments on new clause 17(a) will be brief in comparison with my previous speech.

Yesterday, my hon. Friend the Member for Ipswich and I disagreed on a point of detail. In fact, he was right and I was wrong. As he said, a provision in paragraph 4 of new schedule 1 allows the Secretary of State to dismiss a bad commissioner if the circumstances merit it. Although I still maintain my position that too much power is being given to a single person, I thank my hon. Friend both for pointing that out and for the courteous way in which he did so.

The hon. Member for Reigate has spoken very eloquently in defence of her amendment. Just to recap, new clause 17, tabled by my hon. Friend the Member for Spen Valley, would allow a person seeking an assisted death to appeal to the commissioner if a panel refuses their request. However, it would not allow any other person to lodge such an appeal.

By contrast, new clause 17(a) would allow several other parties to lodge such an appeal, including the two doctors who took part in the process, the applicant’s next of kin or relatives, or anyone who took part in the proceedings before the panel or who gave evidence to the panel. I acknowledge that there are genuine arguments against accepting new clause 17(a), and I have listened to them in detail and given them sincere thought. The family members who might appeal against a decision could perhaps have little or no contact with the person on whose behalf they say they are appealing; I note that the hon. Member for Harrogate and Knaresborough made a very honest and personal intervention on that subject yesterday, and I accept that that is a real possibility. As we all know, families are complicated.

There is also a likelihood that allowing more people to appeal against a panel’s decision, both for and against an assisted death, could mean that the commissioner will need considerably more resources. Otherwise. it is very likely that appeals will not be heard within a reasonable period.

Those are genuine arguments, but there are equally strong counterarguments. If the Bill passes, we simply do not know how many coercive or abusive people will seek to drive others towards assisted death. My hon. Friend the Member for Spen Valley spoke about coercion being a criminal offence, but the last figures I have seen show that only 4% of cases result in a conviction. However, it is worth noting that many people with experience in this area are very concerned about the possibility.

We also do not know how many people will opt for an assisted death because their palliative or social care needs are not being met. Again, as I referred to extensively in previous speeches, many people with first-hand experience of this field are extremely concerned about that.

We also do not know how many people will opt for an assisted death partly because they do not want to be a burden on their loved ones. We do not know how many of those loved ones would, in fact, be ready to care for the person who feels like a burden, nor do we know what safeguards, if any, will prove effective against any of those dangers.

One thing we do know is that relatives or carers of someone seeking an assisted death may be able to bring those dangers to light. A family member, a GP or even a paid carer may have seen someone come under coercive control. As new clause 17 stands, they might feel that the panel had made a terrible mistake in ignoring the evidence of that. The hon. Member for Reigate’s amendment (a) to the new clause would give those people the chance to bring their evidence before the commissioner.

I have to say that, as it stands, new clause 17 seems to make some fairly odd assumptions. It would allow an appeal if the applicant’s request for an assisted death were turned down, which means that my hon. Friend the Member for Spen Valley acknowledges that the panels may on occasion get things wrong. But the right of appeal is only one way, which seems extremely odd. It surely cannot be the case that the panels might get things wrong when they turn down a request for assisted dying, but are always right when they accept them.

There surely needs to be an amendment that allows people with knowledge of the situation to appeal if they think the panel has made a mistake in allowing an assisted death. Amendment (a) to new clause 17 would also reduce some of the dangers that we first faced. On that basis, I urge the Committee to support the amendment.

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

Rachel Hopkins Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Lewis Atkinson]

That is entirely right. The response of public bodies such as NHS trusts is a slightly different issue. I would not want to speak for the Government or imagine what the Secretary of State might say, but it would be inconceivable to me for a quasi-independent public body to decide, on a vote on principle by some local governors, not to offer citizens choices that have been enshrined in law. That is a slightly different point, but I am grateful to the right hon. Gentleman.

The hon. Member for East Wiltshire suggested yesterday that if someone chooses to have an assisted death, everyone in the care home or wherever would be part of it. That fundamentally misunderstands the point; I will go for “misunderstands” rather than doubting his intentions, but some would see it as scaremongering. No one is asking for the right to do it in a communal area, where staff or neighbours are forced to observe or participate in any way. Where people live in their own home, they should have rights and dignity at the end of life, whether that is in a care home or in a private residence. We cannot deny them the choice to access end-of-life options, as set out in the Bill. I therefore cannot support new clause 22.

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

Does my hon. Friend agree that, given patient confidentiality, it is highly unlikely that other residents of a care home would even be aware?

[Lewis Atkinson]

That is entirely possible. Clearly it is up to the individual concerned to discuss how far they wish to share with neighbours or friends, in the home or elsewhere, but we must not get to a situation in which, as a policy default, someone’s intentions at end of life are broadcast within a certain radius. My hon. Friend is entirely right and helpful in making that point.

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

Rachel Hopkins Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Sean Woodcock]

I am afraid I just do not agree. My view is that if we are going to do this, it should be done via the NHS. As somebody who stood on a Labour election platform not too long ago, that is something I stand by.

We know that geography and socioeconomic factors render access to healthcare, especially private healthcare, unequal. In oral evidence, Baroness Kishwer Falkner, head of the Equalities and Human Rights Commission, and Fazilet Hadi of Disability Rights UK both explained how the impact of the Bill on an unequal society might cause problems. Baroness Falkner said that

“from what one understands, GP provision and general access to healthcare are poorer where demographics are poorer than it is in the better performing parts of the country. One other factor to consider in terms of a postcode lottery is that people in wealthier parts of the country tend to be more highly represented in private healthcare than in public healthcare and use of the NHS. That also impacts their choices and the care they get.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 181, Q235.]

The system must not only be fair, but be seen to be fair. If we had such a system of private provision in place, public trust would almost certainly fall. We do not have to look far to see what happens if these matters go unaddressed. When we have a lack of oversight and accountability, it is the public who suffer. There have been too many scandals in recent history for us not to recognise that reality.

One of the big factors in the Post Office Horizon scandal was that Fujitsu, the supplier of specialist computer software, did not admit when it knew that things were going wrong. I have spent much of my working life in the public sector and I am not saying it is perfect—far from it—but the Horizon scandal is an example that teaches an important lesson. Sometimes private companies will not share information that could mean they lose a lucrative contract. They do not have the same oversight as public authorities, which are ultimately accountable to the Government, to Parliament and, through them, to the public.

We must give the public reason to trust that assisted dying services will have proper oversight; otherwise, the consequences will be felt not just in the provision of assisted dying but in healthcare more generally. Amendment (c) to new clause 36 addresses some of the risks by establishing that voluntary assisted dying services must be provided by a public authority. Furthermore, a body contracted by a public authority to provide the service must be a public authority.

A public authority is defined as:

“A body substantially publicly funded which performs statutory duties, objectives and other activities consistent with central or local governmental functions.”

It is clear that public authorities have stronger mechanisms for transparency and reporting. Requiring assisted dying provision to be through such authorities also places the responsibility firmly with the state. It allows the direct implementation of regulations and guidelines on the provision of assisted dying. Best practice is easier to establish when the regulations apply to the same types of organisations.

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

It is a pleasure to serve under your chairship, Ms McVey. In similar circumstances, with the provision of intense personal services such as in vitro fertilisation, there are a range of providers, some in the private sector and some in the public sector—in fact, most are in the private sector even if they deliver under NHS funding or an NHS contract—but they are all subject to the same rules, inspection and regulations. Does my hon. Friend not accept that if it can work in an intense, personal and sometimes ethically complex situation like that, it could equally work here, because there is experience in that sort of environment?

[Sean Woodcock]

I accept that it could work, but my view is that it is far less likely to work and that it is more likely to be successful if it is wholly the responsibility of public authorities.

I will vote in favour of amendment (d) to new clause 36. It would remove subsection (6), which says:

“Regulations under this section may make any provision that could be made by an Act of Parliament; but they may not amend this Act.”

It strikes me as dangerous to provide in the Bill for the Secretary of State to amend primary legislation, and we should vote to remove that power. It is surely a weakening of the Bill’s safeguards. Assisted dying must remain firmly in the control of the democratically elected Parliament. I urge Members to join me in voting to remove subsection (6).

If we fail to rule out the possibility of private provision and allow the Secretary of State the power to amend primary legislation, we will fail to implement the necessary safeguards. Amendments (c) and (d) to new clause 36 would go some way to addressing that, by ensuring that the state that sanctions assisted dying is also the body that provides it. Assisted dying services need strong reporting and accountability; otherwise, we risk inequality, or the abuse of assisted dying going unchecked. The provision of assisted dying through public authorities is essential to proper accountability, reporting and best practice, so I urge the Committee to support the amendments.

Terminally Ill Adults (End of Life) Bill

Rachel Hopkins Excerpts

Report stage
Friday 20th June 2025 Commons Chamber

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

I rise to speak in support of the Bill on Third Reading, because at its very heart are terminally ill adults: people who are dying; people who have less than six months to live; people who have tried to stay alive, to beat a terrible disease with expert medical treatment, but to no avail. Now they face the inevitable: that they will die. In fact, that is the only thing any of us know we will ever do, really.

I am sure that most of us think about and desire a peaceful, pain-free death where we slip off in our sleep at a ripe old age, having lived a good life, but the reality is that all of us and all our citizens—those for whom we legislate in this place—could face a painful and undignified death. That is why I believe that in the 21st century, like a growing number of other countries, we should change the law to permit choice at the end of life—or rather, choice towards the end of death—so that dying people can opt to have a death in the manner of their choosing and have an element of control over those last days.

YouGov polling published yesterday again showed that the public—the citizens we serve—back it too, with 75% supporting assisted dying in principle and 73% supporting the Bill as it stands. As a co-sponsor of the Bill, and having served on the Bill Committee, I am pleased that it is had more scrutiny, challenge and debate than almost any other piece of legislation—over 100 hours, in fact.

[Joe Robertson (Isle of Wight East) (Con)]

Will the hon. Member give way?

[Rachel Hopkins]

I am sorry, but we are short of time.

The changes that have been made, including many proposed by Members who do not support a change in the law but which have been adopted by the promoter of the Bill, my hon. Friend the Member for Spen Valley (Kim Leadbeater), as well as those proposed during the process she has led in response to evidence submitted during the scrutiny process have led to a better Bill. The Bill has greater safeguards for more vulnerable people, with mandatory training requirements, including in relation to coercion and capacity. The Bill ensures judicial oversight of decision making by a range of experts, including psychiatrists, social workers and senior legal professionals. The Bill will set out statutory protections for those workers who do not wish to take part in the assisted dying process on the basis of conscience, and quite right too.

The Bill will provide for one of the tightest, safest assisted dying laws in the world. Importantly, the Bill has compassion at its core by affording dying people choice at the end of life. I thank every one of my constituents who shared their views with me, whether for or against a change in the law. I particularly thank all those who have disagreed with me, because good democracy and the right to disagree respectfully is hugely important; perhaps it is a debate for another time.

I also thank all those who have shared their personal stories of loved ones’ deaths, some brutal, painful and traumatic—a stark reminder that the status quo is simply unacceptable. Others have shared experiences with loved ones who, in other jurisdictions, such as Australia, were able to have a peaceful death, surrounded by loved ones and at a time of their choosing.

As I come to a close, although not everyone would want to choose an assisted death, I believe that everyone should have the opportunity to choose one if they so wish. It really is time that this House takes the important, compassionate and humane step towards making that a reality by voting for the Terminally Ill Adults (End of Life) Bill.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

That was a four-minute speech—thank you very much. I now call the Father of the House.