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 (Third sitting)

Rachel Hopkins Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Lewis Atkinson]

Q I think around 650 people with a terminal illness currently take their own lives a year. If we see a success with the Bill, I wonder whether there would be a reduction of that number going forward. Do you think that could be incorporated in monitoring going forward? Do you think there are opportunities to avoid that suffering? People are clearly experiencing traumatic deaths at the moment.

Dr Cox: It is really difficult to know how many people who die by suicide because of their terminal illness would instead access assisted dying, and it is really difficult to understand the impact of assisted dying legislation on that. If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis. What we need for that is better mental health services, better support around diagnosis and earlier palliative care.

The other piece of evidence that I would offer to you is that the global picture of what happens to suicide rates after assisted dying legislation is introduced is confusing and mixed. But there are jurisdictions, for instance Germany, where after the introduction of assisted dying legislation the incidence of suicide has gone up year on year. I do not think we can say that introducing assisted dying legislation will stop those suicides.

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

Q I want to build on the comments about the multidisciplinary teams that you all work with. The chief medical officer said, in one of the sessions earlier, that discussions about death, dying and end of life are increasing. They are getting better. However, importantly, when we heard from Professor Ranger of the RCN and from the Association of Palliative Care Social Workers, they also talked about the conversations that they have, as part of the wider team. Quite often, it is nurses having those conversations.

I was struck by the way the RCN talked—and you, Dr Clarke, used the word as well—about not being paternalistic, about having the patient at the centre of that conversation, and about ensuring that we listen to the patient and ask them, “What is it that you want?” That, for me, is all about autonomy. Do you agree? The emphasis must be on patient autonomy and their choice at the end of life.

Dr Clarke: One hundred per cent. Sometimes, those of us who work in palliative care almost see the extent to which we try to place the patient at the centre of everything as quite radical, when contrasted with a lot of the other medical specialities. My opinion about what is best for a patient does not matter; their opinion is what counts.

The power of the multidisciplinary team, and the reason for thinking that it may be worth considering amending the Bill so that there is a greater role for a multidisciplinary team, is this: the fact that everybody in that team brings their unique perspective. In my hospital, whenever there is a tricky issue regarding a palliative patient, we will have an MDT. There may be 10 people in the room, all discussing the issues. It might be that someone has decided that they want to withdraw their life-prolonging treatments, or they want to have life-prolonging treatment and, for whatever reason, it is really complicated. We will have the patient, their family, doctors, nurses, social workers and dieticians—a big group of people—in the room because that is the way to make the decision most safely and most effectively, in terms of enabling the patient to have the treatment that they wish to have. It is incredibly important to have that.

[Rachel Hopkins]

Can I ask Mr Sanderson to reflect on that, for the different context, Mr Dowd?

[The Chair]

No. Order. We have two and a half minutes to go. One other hon. Member wants to ask a question. I want them to come in.

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

Rachel Hopkins Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

I mean no discourtesy to the Committee, but we have 20 minutes, and 10 Members wishing to ask questions, so we have to move this on I am afraid.

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

Q Can I ask you, Mr Amin, about your views on coercion, particularly in the light of clause 2 in reference to the Mental Health Act 1983 and the Mental Capacity Act, and any thoughts you have about that in relation to the groups you represent?

Yogi Amin: As I said, I have worked in this area for over 20 years. I represent individuals week to week in this area and safeguarding is all across what is needed for these individuals. The professionals who are involved in their lives are regulated. We are talking about doctors who are meeting individuals, and they understand what it means to identify safeguarding triggers and where referrals are required. That makes it quite strong in this particular Bill.

I am comfortable with the wording as you have it in the Bill, and I say that as someone who has worked in the area for many years. Lawyers will go to court and pick over words, but the way it is drafted, it is understood that there is voluntariness, as described in the Bill, and coercion. I do not think that additional words are necessary to describe what is required here—it is a voluntary, free-will decision, and coercion is defined. When we are talking about a doctor trying to understand that and a court then interpreting it, I think it is pretty clear what that is, so I am comfortable with the way it is drafted.

Generally, from a safeguarding perspective, there are, as Tom said, a number of points at which professionals ask individuals for a decision on this over a number of weeks, and it goes into months. There is quite a robust process. I point also to footnote 3 for paragraph 4 of my written evidence, where I have referred to the current existing law outside the Court of Protection, where it might be thought that the person has capacity but there are concerns about coercion and so on. There is, under section 42 of the Care Act 2014, the provision for safeguarding referrals. There is, under section 222 of the Local Government Act 1972, provision for a local authority where referrals are made to bring the matter before the court under the inherent jurisdiction.

The inherent jurisdiction does not go away; it is here and available where there are concerns over the safeguarding of an individual to allow them to make their own individual, free-will decision. It is not there to do anything other than protect that individual and have a safety net around them to ensure they can make individual, autonomous decisions. Nothing needs to be tinkered with in the current Bill, because that is there—Parliament has already provided for that. Have I answered your question?

[Rachel Hopkins]

You have given clarity. Thank you.

[Juliet Campbell (Broxtowe) (Lab)]

Q My question is for Professor Shakespeare and Dr Griffiths. Clause 4 of the Bill offers the opportunity for clinicians to instigate the discussion on assisted dying. Could you both tell me your view on that, please?

Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious. As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act.

Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live. That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed.

It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes. Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion.

We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made.

Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice. They need access to advice, and that means legal aid. I point in that paragraph to the provision of non-means-tested legal aid, just like in the case of parents of children and the withdrawal of life-sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.

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 (Seventh sitting)

Rachel Hopkins Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Naz Shah]

Q Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”

What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?

Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

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

Q Claire, you mentioned multidisciplinary teams and decision making. We have heard in a couple of other evidence sessions from palliative care social workers, nurse practitioners and the Royal College of Nursing about the multidisciplinary approach in care. What are your thoughts on the ultimate approval as set out in the Bill being a doctor, another doctor and then a legal okay at the end? Would a more multidisciplinary approach to approval have stronger outcomes or better safeguards?

Claire Williams: I absolutely agree that a panel/committee approach would have better safeguarding for patients, because the decision is being made collectively with legal expertise and with other healthcare professionals—that might be palliative—or ethicists like myself. It is having that collective view, ensuring that everybody is happy and that that is exactly what the patient wants. I believe it should be a committee/panel-based approach for the final decision. As I said before, expecting a High Court judge—just one individual—to make that decision alone is hugely burdensome and not an approach that we should be taking.

[Tom Gordon]

Q Professor Preston, we have heard from a wide range of different people from different jurisdictions. What we have heard and the evidence suggest that where we see assisted dying as an option, we tend to see improvements in palliative care. Do you have any comment on that and how we could better integrate into giving people that choice? You talked earlier about different routes and different systems in countries where it might sit outside the healthcare setting. Would that limit the choice and hinder people’s ability? How do you see that having a play in this?

Professor Preston: There is a bigger and bigger conversation in a lot of these countries, including the Netherlands and Switzerland, that this is not about healthcare. I know that sounds a really strange thing, but it is about self-determination and a life choice. I remember someone saying to me, “Well, you wouldn’t check who I’m marrying.” They feel it is such a personal choice. I think patients do bring this up. They bring it up all the time now. Studies in Spain have shown that if a patient has a desire for hastened death, the best thing you should do is explore that desire. Why do they have that desire? How can we help you? Are there other needs we can meet? Most people will not want to then go ahead and have an assisted death. This is a minority of people. Could you remind me of the rest of your question?

--- Later in debate ---

[Lewis Atkinson]

Q Pat, if the Bill, as it is currently drafted, had been in place in your family’s situation, what difference would that have made to your family’s experience?

Pat Malone: In all three cases, it would have improved their lives and their deaths. My father died at the age of 85 from pancreatic cancer. He asked me to help him kill himself while he was in hospital in the last three or four weeks of his life. Obviously, I was not able to do so. He suggested that I put poison in his water, which I had no idea how to action. I spoke to his consultant and asked whether he could do anything to hasten his end, and he said, “No, no, no, I can’t.” After that, he lasted another three weeks and he had a horrendous death. It has scarred our family to this day.

My brother contracted the same disease, pancreatic cancer, and having seen my father die, he—having gone to six doctors and asked them whether they could help him end his life; he was under home hospice palliative care at that time—contrived his own suicide. Unfortunately, he asked his wife to sit and hold his hand while he died, as a result of which there was a police investigation into collusion. She and her daughter, who was also in the house at the time, were not cleared for eight months, during which they were interviewed repeatedly about anomalies and what they did or did not know. It was absolutely unconscionable to pile that on top of their grief, at a time when they had just lost their father and husband.

My sister’s death, having seen those two deaths, was much easier. She got motor neurone disease and was not really suffering in the way that my father and brother had been. She knew that her end was going to be as a live brain in a dead body, and that was the horror that she faced. From the beginning, she was fixed on going to Dignitas, which she did. It was not easy because, after the example of my brother’s family, she would not allow anybody in her family to have anything to do with the arrangements that she had to make, which were quite complicated and became ever more difficult for her. First, she could not drive a car any more and was going around on a mobility scooter, gathering endless documents and having all the tests that you need to have. Ultimately, she said, “This is my golden ticket.” When she was accepted by Dignitas, she said that it was the greatest relief of her life. She said, “I know I am not going to get cancer or dementia. I’m going to die painlessly at a time and place of my choosing.”

That is exactly what she did, but she died 1,000 miles from home. She should have died in her house with her family, and her dogs on the bed. She should not have been denied that. Had this Bill been enacted in her time, it would have been a much easier operation. The problem with this legislation mainly is that it is so long overdue. There are people now who are in that position. You may think our family is star crossed because we have had three deaths like that, but I think we are just a normal family. It is happening all the time. Chris Whitty talked on Monday about how we should not rush into this. We are not rushing into it; we are at the back of the queue, really.

[Rachel Hopkins]

Q Thank you all for sharing your family stories today. It is really moving. Julie, I want to ask about your experience in Spain and how you found that particular process in comparison with what we have in the Bill. How did it work? What was positive or difficult for you?

Julie Thienpont: Guido had decided right from the word go, even before he got sick, that that was the way he would want to end his life, if there was a possibility of it. He was from Belgium originally, so he expressed a wish that if ever he needed it, he would like to go back there.

The law in Spain is very similar to the Bill, which I have read through countless times. There are a lot of similarities. There were very rigorous checks. It involved much paperwork, counselling and family liaison. The difference was that it went before a board, so it was a panel that would allow or not allow the decision—it was not decided in a court. That would be the main difference, but the process was rigorous. It was slightly difficult for me, because although I can speak Spanish, the terminology was frequently more difficult, so they very kindly translated for me. They explained everything: what would happen and how it would happen, if it happened. It was a big celebration for Guy when he was actually granted this. They also told us that he could change his mind after he had made the decision, should he wish to. He did once. It was me who asked him to do that, because I did not feel he was sick enough, which sounds a bit silly, I know.

He was an intensely private person. The palliative care in the part of Spain where we were is excellent, but it was quite irrelevant for him because he had already expressed that he wanted to die at home. We lived up a mountain; we were quite remote. Being such a private person, he never wanted to be in a situation where somebody else had to see him in any vulnerable situations, especially with personal hygiene and so on—even me, although I was able to help him in many ways. I had to do a lot of procedures for him, after being trained to do so, but he was more than happy with the situation of having assisted dying once it was granted. He did not need any other sort of care, although we still had a nurse coming every few days and the family doctor came up at least once a week. That does not sound much, but he did not want her any more often than that.

[Danny Kruger]

Q This is a question for Mr Malone. May I say how greatly I sympathise with what you have been through? I am very sorry to be fighting against you in this matter. I really can imagine how that feels. Thank you for what you said. I just want to ask about your sister’s experience. On the eligibility question, is it your belief that she would have qualified for an assisted death under the Bill, with the six-month terminal illness criterion? To follow up on that, do you think we should expand the scope to include people with motor neurone disease who might not fall within the six months?

Pat Malone: She would not qualify, because there was no telling how long she would live as a live brain in a dead body, as she said. It could have been months or even years, so she would not qualify in any case under this Bill. However, you have moved mountains to get to this point, so the last thing in the world I want to do is pile more requirements on the Bill. I would like to see some stuff stripped out of it, actually, to make it easier, but I am not going to ask for that because we desperately need to get away from the status quo. This Bill gets us away from the status quo.

--- Later in debate ---

[Kit Malthouse]

Q I also want to explore this issue of capacity a little further with Dr Price, because I share my colleague’s slight confusion.

You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.

Dr Price: You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are—all of those things.

The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.

[Rachel Hopkins]

Q Dr Mulholland, I want to push a little on where you were saying the royal college sits on the ability of members to say that they would not want to participate in assisted dying, if it came through, and on your written evidence saying that you would like to see a separate body. Given that many GPs are already very much involved in the care of their patients and will often be doing a lot of palliative care themselves, particularly around medications, and given that the Bill is about terminally ill adults with a diagnosis of six months left to live, do you mean that all GPs would stop at that six months and it would go over to an independent body, or are you saying that those GPs who want to continue that care could do so but that those who do not want to be involved in a potential route to assisted dying would step out? I would like a little clarity on that, given the person-centred care that so many GPs do so well.

Dr Mulholland: The shape of the service is not set out in the Bill. We would say that GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. This is an additional thing; this is not part of our core job. We think that a separate service—it may not just be GPs; there may be lots of different practitioners and health professionals involved —would sit better with that. You could then assess the capacity and assess those other parts that are so important and are in the Bill at the later stages.

The GP may have a role, but that would be very much up to the individual GP to decide. It would not be set out that they should be taking part. They would then probably be part of this additional service to which the others who are not taking part could signpost. We just want to make sure that there is that clear space.

[The Chair]

As we have time, I call Danny Kruger.

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.