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

Rebecca Paul Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Kim Leadbeater]

Q To that point, in those conversations where patients are making very serious decisions, it is not uncommon that you would seek additional advice from other professions, such as a psychiatrist or possibly a social worker and other professionals, if you felt there was a need to do so.

Professor Whitty: The further you go up in the seriousness of the decision, the more you would do that. For example, if you were setting a finger that had been broken, you are not going to wait until a psychiatrist has said that you can do that. Within reason, provided that someone gives consent, you will do that. You will be much more cautious about moving forward with things like open heart surgery or deprivation of liberty if you think there is uncertainty. It should be clear. For the majority of people, it is very clear they have capacity or very clear they do not. There is a relatively small—but important—number in the middle where that is less clear and where additional views are relevant, particularly where there is a question of co-existing mental health issues. The fact of the mental health condition does not in itself mean that someone does not have capacity, but what has to be taken into account is, “Do they have the capacity for this decision at this point in time?” That is how the Mental Capacity Act works.

[Rebecca Paul (Reigate) (Con)]

Q The Bill sets out that it should be brought into force within two years. If the intention is to provide assisted dying through the NHS, can the NHS be ready in time to deliver the service equitably and safely? What needs to be deprioritised in order for it do to so?

Professor Whitty: As we have seen in covid, the NHS, like any service, can swing very fast if there is a need for speed. In this case, I think most people in society would say that the key thing is to get this right. Personally, I would rather it was not running against a timeline. You would not want it to drag on forever, because then you have uncertainty for everybody, but I think Duncan and I would both say that two years seems a reasonable starting point. With some things, it might take longer than that to work out how we are going to provide this in the most safe and equitable way—for example, in dealing with minority and other groups. We need to get all that right and, at least at first pass, get it as close to good as we possibly can.

Equally, we may find when we first start using the legislation that there are some things that we had not considered at the beginning, and therefore we need to go back and improve on them because we just had not thought about them in the first way through the gates; that is why I hope that some of the more operational issues are done through secondary legislation and regulation. Inevitably, that is true for many bits of legislation, but it is particularly important here.

I go back to my very first comment: the central person here is an average citizen in their last six months of life. What we do not want is a system very difficult for them to navigate so that they spend their entire last six months of life—if the Bill is passed and they choose to take account of it; they are going to be a minority—stuck in a bureaucratic thicket. We need to keep this simple. My view is that the best safeguards are simple safeguards. Overcomplicating usually makes the safeguard less certain.

[Rebecca Paul]

Q What is a reasonable timeframe, in your view? I appreciate that that is a bit like asking, “How long is a piece of string?” What would you ideally like to see?

Professor Whitty: I think that there is a big difference between the Act coming into initial force—that is, “This is now where the law is”—and the service being provided. On the second of those, I would argue against putting a firm deadline, with a reasonable expectation that the NHS and others should be involved in trying to make plans for this as fast as possible. But if the Bill is passed, we are going to have to sort out multiple different things to get this to work. If we were three months away from being able to get something sorted out, I would not want to have a situation where it all had to start the following day. I think that would make it much harder to provide a safe, fair and secure service.

Duncan Burton: In my understanding, the Bill does not call out the NHS specifically in terms of providing this service. A number of steps would have to be gone through to understand the implications—the operational and training implications, as we have already discussed—to understand the timeline required. For the reasons Chris has outlined and as mentioned earlier, when thinking about the wider implications for the workforce there would need to be sufficient time to be able to work through those.

[Rebecca Paul]

Q Would it be fair to say that you would need to know fairly quickly whether or not it would be provided through the NHS for planning purposes?

Professor Whitty: That is a key question, and to me that does seem something that Parliament may want to debate. That is not a question for us, but it is a point of principle one way or the other.

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

Q I have a question for Chris Whitty. You said you are here representing the chief medical officer for Wales as well. Health has been devolved for over 25 years, of course. What conversations have you had with the chief medical officer for Wales about the differences in how the NHS operates between Wales and England? What are the implications the Bill Committee should know about?

Professor Whitty: First, I have had quite a lot of conversations—not just with the chief medical officer for Wales, but all the other chief medical officers and indeed a much wider range of the medical profession; I wanted to feel that I was giving a central view of the medical profession in terms of the practicalities. My view is that, in a sense, the principles of the Bill are no different between England, Scotland, Wales and Northern Ireland, although the legislation would apply only to England and Wales were it to be passed.

The operational questions we have been talking about will be either subtly or importantly different between the different jurisdictions for a variety of different reasons. I do not think that is a problem, provided it is in secondary legislation and it allows the different jurisdictions to do things in the way that best suits their own set-up. Again, as we saw during covid, different nations will choose to reach the same end state using slightly different practical routes.

--- Later in debate ---

[The Chair]

We will now hear oral evidence from Glyn Berry, via Zoom—hello and welcome—and from Professor Nicola Ranger. We have until 11.25 am. Will the witnesses please introduce themselves?

Glyn Berry: Good morning. My name is Glyn Berry. I am a palliative care social worker and a lead allied health professional. I am co-chair of the Association of Palliative Care Social Workers.

Professor Ranger: I am Professor Nicola Ranger, chief exec and general secretary of the Royal College of Nursing. Previously, I was a chief nurse in acute hospitals for 10 years.

[Rebecca Paul]

Q This is a question for Glyn Berry. A statement that you published in November 2024 says:

“There is a risk that without a more sustainable model of funding for palliative care, many people will choose an assisted death, as the only way to escape from unbearable suffering.”

Can you elaborate on why you say that?

Glyn Berry: Yes. As experienced social workers, working within the realms of a society that is quite often split into “have” and “not have”, we already see the despair and the difficulties that people encounter with inequitable care in palliative care services. We know that a lot of services are delivered by charities as well as statutory agencies and the trusts, and we know that the funding for palliative and end-of-life care is a real issue and has been heading that way for some years.

We would hate to see what has been happening in other countries in which assisted dying is already in place, where people feel that they have no option other than to apply for assisted dying, because they do not know what else might be out there for them. That is the role of a social worker when we work with our patients: we look at the bigger picture, not just at what is happening clinically. Obviously we depend hugely on our clinical colleagues and expertise, but our specialism, if you like, is to look at what else is out there for a patient—and for their family and friends, because they are as much a part of the patient’s journey as the patient themselves.

We also know that palliative and end-of-life care is hit and miss in terms of what people can access. Marie Curie reporting in 2024 showed that there are massive disparities in terms of better care for people at end of life or with a palliative condition, and they have a significant effect. What we say to people is that we will help them to live as long as they can as well as they can in palliative and end-of-life care situations, but that is really difficult when the resources are not there and things become a huge priority.

[Rebecca Paul]

Q What would a more sustainable model of funding for palliative care look like?

[The Chair]

Order. We are going slightly off topic, so could we have a brief answer?

Glyn Berry: It would be something that is equitable for everybody. At this moment in time, it is not. As I say, some people get it and some people do not. A sustainable model would give fair access to everybody.

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

Rebecca Paul Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Dr Tidball]

That is very helpful; thank you.

[Rebecca Paul (Reigate) (Con)]

Q My question is to Dr Sarah Cox. What do you think will be the impact on palliative care of introducing assisted dying?

Dr Cox: Professor Ahmedzai has talked about the evidence, which was written up to 10 years ago. There is actually more recent evidence, looking at the last 10 years, where European countries and American states have been assessed in terms of the development of palliative care services. That more recent evidence shows that although palliative care services have improved in those countries where assisted dying has been implemented, they have improved three times more in countries where assisted dying has not been implemented. The evidence from that study shows that the implementation of assisted dying is impeding the development of palliative care services.

The other thing we are really concerned about is the impact on funding. It is unclear how this is going to be funded. It looks as if it is going to be within healthcare, and if so, there will inevitably be competition with other aspects of healthcare, including palliative care, for those limited resources. There are finite numbers of doctors, nurses and side rooms in hospitals. If palliative care and assisted dying were funded from the same pot, I think there would be a massive detrimental effect on palliative care because we would be in competition for a limited resource.

I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.

[Rebecca Paul]

Q In terms of the data showing that palliative care has not improved as quickly in locations that offer assisted dying, can you offer us any further insight into why that may be? What should the Committee be thinking about, in relation to the Bill, to safeguard against that happening? I think we all agree that we do not want to see palliative care decline.

Dr Cox: The first thing to say is that palliative care is currently inadequate. Not only do we need to ensure that it does not decline, but we need to massively improve it so that this Bill offers patients a real choice. We know that effective palliative care can change a terminally ill person’s point of view from wanting to die to wanting to live.

We also know that 25% of people who die in this country do not have the palliative care they need. That is more than 100,000 people a year. Providing palliative care, which might make their lives better, reduce their suffering and even change their perspective on whether they would want assisted dying, should be our priority in reducing suffering in this group.

I do not know how we prevent this from happening. Making sure that palliative care has separate funding is important, because assisted dying and palliative care need to be separate in how they are delivered and in how they are funded.

--- Later in debate ---

[Jack Abbott]

Q In your view, and that of the rest of the panel, is there a way to legislate to include them?

Sir Nicholas Mostyn: It has been suggested that I want to expand the definition of terminal illness. I do not want to expand it. I want to redefine it so that it is more appropriately focused, in my opinion, on what this Bill should be about, which is the relief of suffering. That is what I believe the Bill should be about. You should get the permission to have an assisted death if you are suffering intolerably within five months of death or seven months of death—there should not be this arbitrary line.

Moreover, it should not be open to people who are not suffering, but who happen to have a six-month life expectancy. There are probably quite a few of them, for one reason or another, whose life expectancy is short, but their pain is well-managed. I do not believe that assisted dying should necessarily be available for them. I do believe very strongly—this is not an expansion, but in my view, a more appropriate focused redefinition of terminal illness—that it should be, as in Spain and in Holland, focused on suffering.

[Rebecca Paul]

Q My questions are to Alex Ruck Keene. Thank you for your written evidence, which I read with great interest. I have two questions for you. This follows on nicely from the discussion we have just had. Is there any risk that if the terminal illness definition were to remain in the Bill, it could be challenged under the European convention on human rights?

My second question, which is completely different—just to mix it up—is on a really interesting point in your written statement about how we need to give consideration to the national suicide prevention strategy. I found that really interesting, because the Bill potentially turns on its head the way we view suicide, and obviously we have been sending a certain message out there, particularly to our young people. Could you elaborate on the point you were making in your written evidence to the Committee?

Alex Ruck Keene: Gosh—yes. There is absolutely no way that you can stop people trying to challenge whatever Act is passed; there is no way you can stop people seeking to challenge that under the ECHR. We then get into this enormous argument about whether it is inevitably discriminatory. Courts to date have been very clear: “We are not going to get into this; it is for Parliament to decide whether to make assisted dying legal.” Once it is made legal for some people, but not for others, there is a difference in treatment. Whether it is discriminatory, and therefore contrary to articles 8 and 14 of the EHCR, depends on whether that difference is justified.

I am trying to be very careful in my language, because I try to do that. The Bill Committee and Parliament need to be very clear how, if you are going to limit this to a cohort of people—I feel acutely conscious that I am sitting next to somebody who would be excluded—it could be explained to somebody that they are not eligible and that there is a difference in treatment but it is perfectly justified. If you cannot do that, it will be discrimination.

The courts have been very clear that you do not have to have a system, but if you are going to have one—for example for social security benefits—then you need to have one that is non-discriminatory. That is the answer I can give to that. The one thing I can say is that you cannot stop lawyers trying to challenge. That is what they will do.

Sir Nicholas Mostyn: All laws discriminate; 69 mph is not an offence but 71 mph is. All laws discriminate. The question is whether it is justifiable.

Sir Max Hill: It is also a question of providing legal certainty, which is why the definitions in the Bill are so important. Provided that it is articulated clearly and within what the European Court so often calls the margin of appreciation, which it gives to sovereign states, then although I agree with Alex that a challenge may be possible, I cannot see a successful challenge to the Bill if it is drawn with the sorts of provisions we have here. Indeed, we have not seen local nation state examples of this sort being struck down by the European Court elsewhere in Europe, so I think it is very unlikely that we would see such a strike-down here.

Alex Ruck Keene: I really hate to get into it with such eminent lawyers, but there has not been a case in Strasbourg seeking to say that a limited class of case is discriminatory, so we just do not know.

Sir Nicholas Mostyn: I agree with that. I have changed my mind twice about this subject.

Alex Ruck Keene: Do you mind if I quickly touch on something else?

[The Chair]

Not just at the moment. We will move to Daniel Francis.

Violence against Women and Girls

Rebecca Paul Excerpts

Thursday 9th January 2025 Commons Chamber

[Rebecca Paul (Reigate) (Con)]

Thank you, Madam Deputy Speaker, for allowing me the opportunity to speak in this incredibly important debate. I very much welcome the Government’s ambition to halve violence against women and girls over the next decade, and I hope everyone in this place will work together to ensure success, because if we do not, it is our daughters, mothers, sisters, neighbours and friends who will all pay the price.

There are many factors driving sex-based violence, and many powerful contributions have been made today laying them out. I intend to speak specifically about the impact of online pornography on attitudes and violence towards women and girls, especially when viewed by young people during their formative years. With 50%—yes, 50%—of all internet-using adult males in the UK visiting Pornhub in September 2020, this is not a fringe concern or something that can be ignored.

To be very clear, we are not talking about the type of content once seen in ’80s jazz mags, but about harmful, degrading and violent imagery that dehumanises women. This type of extreme online pornographic content has proliferated over the last decade and includes footage featuring physical aggression and violence, predominantly directed at women. This material has become mainstream, though it bears little resemblance to real sex or what goes on in genuinely loving relationships. Worryingly, in these videos, women are typically shown responding neutrally when on the receiving end of this aggression, or even with pleasure. Make no mistake, this content reinforces the idea that women desire and derive pleasure from violence, and ultimately perpetuates rape culture. When we then layer on the fact that this content can be pulled out of anyone’s pocket and watched repeatedly throughout the day on smartphones, even by children, it becomes clear why this is such a problem for our society. Boys will think that this type of activity is normal in the bedroom, while girls will think it is expected.

A survey done by the Children’s Commissioner in November 2022 found that one in 10 children had seen pornography by the age of nine, with half having seen it before they turned 13. It is horrifying to think of our children watching these acts of sexual violence that they cannot properly comprehend or understand. Its consequences can be clearly seen, with 47% of young people between the ages of 16 and 21 stating that girls “expect” sex to involve aggression, and a further 42% stating that most girls “enjoy” it. A study that analysed heterosexual scenes published on two leading free pornographic websites found that between 35% and 45% of content contained at least one act of physical aggression, the most common of which were gagging, choking, spanking, slapping and hair-pulling. Women were the target of the aggression in 97% of those scenes. It can be no surprise to anyone that if young men are watching this content day in and day out, it will impact their perceptions and relationships with women negatively.

Hundreds of studies have been undertaken over the past 30 years, which confirm the obvious: porn culture is pervasive and influential. It has normalised and sexualised choking and strangling of women during sex, spitting on them, and other unsafe and degrading acts. As Dr Jackson Katz, an educator and author, has said,

“It requires wilful naivety to pretend that this has no negative effects on generations of young people’s sexuality or has no connection to the ongoing pandemic of men’s violence against women”.

Moreover, disturbingly, frequent viewing of online pornography can desensitise some men to sexual content, driving a need for ever more hardcore content to satisfy them. This causes some boys and men who would not otherwise do so to escalate to viewing illegal content such as child abuse imagery or rape videos.

So what do we do to address this situation? It is not easy—it is a bit like trying to get the genie back in the bottle—but we must address it. I suspect that in the years to come, we will look back at the content that was so accessible to our children and so damaging and be utterly incredulous. Today, I have two asks for the Minister. First, we must put in place basic safeguards requiring online platforms to verify that every individual featured in pornographic content is an adult and gave permission for their content to be published. Verification information must be provided by each individual featured in the content, not by any other person, and most importantly, failure to comply with this requirement must result in robust sanctions by Ofcom, including preventing the website in question from operating in the UK if need be. Enforcement must be swift and robust to protect victims and create the necessary deterrent effect.

Secondly, we must bring the regulation of online pornography in line with that for offline pornography. The main statutory regulator of offline pornography is the British Board of Film Classification. It is responsible for classifying pornographic content before it can be published and ensuring it does not contain illegal content such as child sexual abuse, incest, trafficking, torture, rape or strangulation. Any such offline illegal content cannot be sold or supplied in the UK, yet the law has never been extended to cover regulation of online pornographic content. This is anachronistic.

[Dame Karen Bradley]

My hon. Friend is making a powerful point: what is illegal offline must be treated the same way online. I fully support everything she is saying.

[Rebecca Paul]

I thank my right hon. Friend for that intervention, and I completely concur. The fact that our laws have not been extended in this way demonstrates that they have not kept up with our ever-changing world. I therefore call on the Government to ensure that online pornographic content is held to the same standards as offline pornographic content.

Lastly, I thank the all-party parliamentary group on commercial sexual exploitation for its groundbreaking inquiry into pornography during the last parliamentary term. That APPG has shone a light on this important issue, and has not shied away from harsh truths. We cannot end the epidemic of male violence against women and girls in this country without recognising and confronting the role that harmful online pornography is playing. Enough is enough. If everyone in this House cares about women and girls—and our boys too, because this is bad for them as well—it is time to take action and ensure that online content is properly regulated.