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

Debate between Rebecca Paul and Kit Malthouse

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Rebecca Paul]

I welcome the hon. Lady’s intervention, but the point I am making is not about coercion; it is about the subtleties in families’ relationships. I was trying to bring to life a situation—sometimes it is families who understand the relationships, the dynamics and the pressure points. It is very hard for professionals to get underneath that.

In a sense, families are the greatest experts, but the process as drafted excludes that expertise. Under my amendment, if a family member had knowledge that could make the difference between life and death, they would be able to apply to the panel. If there had been a clear error in applying the eligibility criteria, the application would be reconsidered. It is true that the panel will be informed by at least one of the doctors and that it has the option of hearing from others. Perhaps the panel will always be incredibly thorough and explore every avenue, but we have to legislate for every situation, including situations that are not ideal.

We can learn a lot from other jurisdictions. In written evidence, the academic Christopher Lyon from the University of York describes his experience in Canada. Dr Lyon writes that his father, who was “openly suicidal” and had a “history of mental illness”, qualified for medical assistance in dying in 2021. In Dr Lyon’s words:

“He was classed as having a ‘foreseeable natural death’ (i.e., terminal illness), my family was told, because he had momentarily skipped some meals at his residence and had an elevated but unremarkable white blood cell (WBC) count that the AD doctor suggested might be an infection that, if untreated, might become lethal, despite being a common side effect of his arthritis medication.”

Dr Lyon says that when he was informed two days before the event, he pushed for an urgent psychiatric assessment to be carried out. Dr Lyon has obtained a copy and says that it is

“full of errors. It claims he wasn’t suicidal, when he had a whole history of suicidality. It states he didn’t think he was depressed, and yet on the list of medications there was listed antidepressants.”

Dr Lyon’s concerns about his father’s prognosis, the assessment and other aspects of the events were widely shared, he says:

“After he died, the provincial regulatory college, police, and even other AD clinicians suggested his death was questionable or even wholly unlawful. However, privacy law and the continuing resistance from the local health authority have so far succeeded in blocking access to his medical records necessary for a full investigation”.

In Ontario, meanwhile, the chief coroner has published a report detailing the assisted death of an anonymous patient, Mr A, who had inflammatory bowel disease. He was unemployed, dependent on his family for housing and financial support, and struggled with alcohol and opioid misuse. He received an assisted death on the basis that his illness was advanced, irreversible and causing intolerable suffering. According to the coroner, the family were not consulted by those involved with processing the application, even though it was recorded that the family expressed concerns. Most members of the death review committee thought that shutting the family out was a mistake. The committee concluded:

“Engagement with family and/or close relations in the MAiD process should aim to be a key component of MAiD practice.”

We can hope that these were exceptional events, but they are the kinds of situation in which a panel might have benefited from a family perspective, which is the reason why I cite them.

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

As my hon. Friend heard yesterday from the hon. Member for Rother Valley, there are multiple points in the new system at which family could make their views known. Indeed, they could apply very quickly for an injunction if they thought something was untoward.

My hon. Friend has talked a lot about families knowing best. Surely it should be the dying person who chooses how best to handle their family. The evidence overseas is that giving dying people choice about the manner and time of their death also gives them the choice about how to handle their family, and particularly their children. My hon. Friend might have a particular approach, and mine might be completely different, but I should have that choice. She seems to think the family know best for the dying person—how come she does not think the dying person knows best for their family?

[Rebecca Paul]

My right hon. Friend makes an important point. I do not think family always know best. There are situations where someone rightly will want to exclude their family from the process, and I totally respect that choice. I am saying that there will be other situations in which family do have something valid to input that could impact the panel’s decision making. My right hon. Friend also mentioned injunctions; I am keen to understand more about how that process works as a protection, so perhaps the Minister could respond on that, because that may well give me some reassurance. I will come to judicial review in a moment.

My right hon. Friend is right that this is not easy. I am not saying that family should be involved in all situations. I am saying there is a balance to be struck, and I do not think we are getting it right, because at the moment it is all about full autonomy. The working assumption is that input from family must always be ignored if the patient wants that. There must be a balance, and it is difficult to say where that should sit, which is why we have such an incredibly difficult job with the Bill.

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[Rebecca Paul]

This is a really important opportunity to share all these examples. I have to be honest that I am not sure I see the relevance of how a case is funded, and I cannot speak on that person’s behalf. I am going to talk about some of the inequalities that come from this, because there will be people—we will come to this when we discuss judicial review—who will rely on legal aid to challenge a decision. If we do not get this right, we are in danger of creating a situation in which poor families cannot appeal and rich families can. That could give rise to the less than ideal situation the hon. Gentleman has raised. If we get this right and make sure that an appeals process is available on an equal basis to everyone in the country, that will prevent the kind of situation the hon. Gentleman has raised. I thank him for that, because he has helped to support the case for my amendment.

[Kit Malthouse]

I have to say that my concern about the hon. Lady’s amendment is growing. We have talked in the past about policing the conversation and the process to the point that it becomes guarded. Say I had a strong, long-standing conviction that I wanted assisted dying if I was in extremis, but I had a child who I knew was violently against assisted dying; if the hon. Lady’s amendment were in place, and there was the possibility of appeal, surely my tendency would be to keep my disease and diagnosis, and my approach to the system, secret from that person. By opening this formal door, I would effectively be encouraged to conceal the process from a family member who I know may object.

I say that particularly in the light of the fact that, as we heard from overseas experience, coercion more often than not comes the other way. That is certainly what they see in Australia, where families try to persuade somebody not to do it. I think the hon. Lady has good motivations, but I am concerned that she might actually produce the opposite effect and drive people into secrecy.

[Rebecca Paul]

I thank my right hon. Friend for that alternative perspective. The appeal process is valid only if there is new and relevant information that the panel did not have. For someone who is absolutely eligible, nothing has been excluded from the process that would change their eligibility. There is nothing to worry about here, so I am not sure that I concur that my amendment would prevent sharing information. However, it would provide important protection when a bit of relevant information has not been shared with the panel, which I think is the greater harm. We are trying to weigh up the harms to make sure that they do not outweigh the benefits; I honestly believe that the amendment would help to balance the scales a little better.

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[Rebecca Paul]

That comes under subsection (2) of my amendment:

“The Commissioner will allow the application for reconsideration if the Panel’s decision was—

(a) wrong, or

(b) unjust”.

It is implied that the decision is wrong because there is missing information. Missing information is one example; other things would enable an appeal, but the obvious and most likely reason in this instance would be that a certain bit of information had not been shared.

I am not saying that the amendment is perfect in any way. It is set out clearly in guidance on the private Member’s Bill process that amendments will not necessarily be drafted perfectly and that it is incumbent on the Government to take the spirit of what is intended and get the clause to an appropriate place to deliver that. I am happy to work with the Government to ensure that the wording works and is clear. I think the hon. Lady’s point may be that it is unclear; I am happy to work in any way to improve that clarity.

[Kit Malthouse]

Through my hon. Friend, may I respond to the point made by my hon. Friend the Member for East Wiltshire? It is not necessarily about not having faith in the panel. Somebody may, for example, have a relative driven by a strong religious faith who wants to create some form of delay in the system, just to put off the awful day. Even if a commissioner were to take that relative’s application and decide that it was not valid, that would inject delay into what is naturally a time-limited process.

A person may want to retain the right to handle their family themselves, and have the choice about how to do that. If the state, rather than the dying person, is effectively deciding how the family should be handled, we are naturally giving that person an incentive to keep this thing quiet until they are ready to tell their family, which may be well towards the end of the process. As the hon. Member for Rother Valley said, there are multiple points at which the family can intervene if they know. My concern is that this kind of—what is the word we have been using?—embroidery actually drives people in the opposite direction to the one my hon. Friend the Member for Reigate wants to achieve.

[Rebecca Paul]

I thank my right hon. Friend for raising that point, because it gives me a wonderful opportunity to draw everyone’s attention to subsection (3) of my amendment, which states:

“The Commissioner may consider the application without a hearing if they consider it in the interests of justice to dispense with a hearing.”

My right hon. Friend is absolutely right that time is of the essence and that there will be situations in which it is right that things move as quickly as possible. I hope that that goes some way towards reassuring him that I am trying to come up with amendments that are balanced. I am aware that we have two different examples here; I am genuinely trying to make sure that I do not make it harder for those genuine cases, because I totally understand how important it is and I understand that there is a lot of pain and suffering, for all the reasons that have been set out. I hope that I am getting the balance right, but I am always happy to have further discussions.

Sir James Munby was one of the first to criticise the High Court safeguard; the hon. Member for Spen Valley says that she has taken those criticisms on board. His criticisms of the panel seem similarly acute. I hope that the Committee will agree that my amendment answers a real need and recognises the important role of family in the death of a loved one in most situations, although I accept not in all. It has a profound and long-lasting impact on them too, and their needs should not be entirely disregarded in the name of autonomy. The hon. Member for Rother Valley gave a very powerful speech yesterday on the subject, setting out that the amendment is not required because any decision could be judicially reviewed. I am not qualified to opine on whether judicial review would be relevant with this panel, but I look forward to the Minister covering the matter in her closing remarks. We need to be clear on that front.

Judicial reviews are a challenge to the way in which a decision has been made, rather than to the rights and the wrongs of the conclusion reached. It is important that this is understood. A judicial review just checks that the process was followed, not whether the right decision was made. That is why our role in setting the process is so important. If the new clause remains unchanged and there is no requirement for a panel to accept relevant evidence from a family member, there will be no avenue for appeal under judicial review if such information is not taken into consideration when making the decision, because the process will have been followed.

Our role on this Committee is a heavy one. It is about getting it right and setting the process for judicial review to work as it should. We have an appeal process in the new clause for when a panel wrongfully turns down an application, but not for when it wrongfully approves one. Why not, if judicial review is available and suitable? I suspect that it is because, as the hon. Member for Rother Valley is aware, the judicial review is not the best way to do it. It is a long, onerous process involving application for permission and, in some situations, the securing of legal aid, which is fraught with difficulty. I say gently to the hon. Member that if judicial review is not suitable when the panel has wrongfully turned down an application, then why is it suitable when they have wrongfully approved someone for an assisted death?

I think it is clear that my amendment is needed as a safeguard to prevent wrongful deaths under the Bill. It is a helpful safeguard. No panel will ever want to see someone assisted to die who should not have been, just because it did not have all the information. I suggest that the safeguard will help to secure panel members, because they will feel reassured that a process is in place to avoid mistakes. If my amendment is not agreed to, and if wrongful approvals have to rely on judicial review for a remedy, I suggest that the impact assessment will need to take into account the likely impact on socioeconomic groups that rely on legal aid for funding. I suspect that, owing to a lack of funds, they will find themselves with no avenue at all to appeal. I do not think that any of us wants a two-tier system in which rich families can intervene and poor families cannot.

Protection of Children (Digital Safety and Data Protection) Bill

Debate between Rebecca Paul and Kit Malthouse

2nd reading
Friday 7th March 2025 Commons Chamber

[Rebecca Paul (Reigate) (Con)]

I am pleased to speak in support of the Bill. I must start by declaring an interest: I am a mother of three children who enjoy nothing more than staring at their screens day in, day out—if they could, they would be on them 24/7. No longer are our children clamouring to go out and play or to see their friends; instead, they want to do everything through a screen. They want to watch endless YouTube videos. I never realised that the unpacking of a toy or slime making could hold such interest. It seems that they take their joy in watching others do things online—even, rather bizarrely, playing computer games—instead of actually doing them in the real world.

I would be a hypocrite if I did not call out my own behaviour on this front. I, too, am addicted to my phone. Yes, I need it for this job, so I can justify some of my use, but I often find myself endlessly doomscrolling, and I am too embarrassed to tell the House how many hours I spend staring at it every week. At least my addiction started when I was a fully developed adult, after a childhood of play and socialisation when I learned much-needed life skills. This generation of children is not so lucky.

The huge amount of time spent online is incredibly damaging in so many ways. It is no coincidence that we see a mental health crisis in our young people at the same time as mass adoption of smartphones and access to social media. Some may underplay the importance of social media and screens in the challenges we face as a society, and indeed it can be difficult to conclusively prove the role of one particular factor in the effects we are seeing, but I suggest that when it comes to our children, we should always err on the side of caution and protect them from potentially harmful influences. In a recent survey, social media and excessive screen time was ranked as the top issue affecting children’s mental wellbeing. To put that in context, it was ranked higher than alcohol and bullying.

Another significant risk to mental health is exposure to harmful online content. I am incredibly concerned about that, especially given the proliferation of extreme pornography, harmful content and unrealistic body images. If children spend all their time in this fantasy world that is completely disjointed from reality, of course it will change how they view people, relationships and the world in general. That is supported by Ofcom’s 2024 research, which showed that older teens are finding it harder to distinguish the real from the fake online. The more mundane things in life that do not trigger a dopamine hit seem an even less appealing way to spend time to a child jacked up on likes and shares. Children’s attention spans are getting shorter, and they have an ever-increasing need for higher levels of stimulation. Is it any wonder that our children seem less interested in reading a book or baking a cake nowadays?

The evidence from Health Professionals for Safer Screens shows that children who routinely spend extended periods on their smartphones have poorer eyesight, inhibited speech and language development, interrupted sleep, and rising rates of anxiety. We are allowing our children to become addicts. Social media is designed with exactly that in mind. It is meant to be addictive and compelling. It wants users to stay online for prolonged periods and to keep engaging with content. Those of us who use it ourselves know this all to be true, so how on earth do we expect our children to manage and moderate appropriately?

Ofcom’s 2024 research showed that the overall use of social media sites or apps among five to seven-year-olds had increased year on year. Online gaming among that group had also increased significantly, as had the watching of livestreamed content. Under current data protection law, the age at which children can access information society services—ISS—is 13. ISS includes most social media platforms and content streaming services. It is important to acknowledge that the Online Safety Act 2023 introduced protections for children by ensuring that online platforms will have to remove illegal content such as child sexual abuse material, prevent children from accessing harmful content—for example, that encouraging suicide, self-harm or bullying—and introduce age-checking measures to restrict access to pornographic material. Those are all very welcome improvements, but they need to be put in place at pace and be effectively enforced.

I commend the hon. Member for Whitehaven and Workington (Josh MacAlister) for all his work on this important topic. I will do all I can to support him in making the online world safer for our children. The Bill is an important precursor to the myriad changes needed in this area, and I know that many parents will support him in calling for the digital age of consent to be looked at again. While the Bill does not call for the age limit to be raised to 16, it does call for the UK’s chief medical officer to look at this important issue in detail and, ultimately, issue a statement on whether it should be raised.

Some 75% of Brits now back raising the minimum age from 13 to 16, as per a recent survey by More in Common, for all the reasons that have been raised today, and 129,000 people signed an e-petition calling for social media companies to be banned from letting children under 16 create social media accounts. It is past time for tech companies—and Members of this House—to take responsibility for keeping our children and young people safe.

I am not normally in favour of blanket bans, and I often talk about the importance of parents and carers taking responsibility for their children. However, in this instance, I deviate a little. As a parent who is wrangling with this exact issue myself, I know how difficult it is to tell a child that they cannot do something that every single other child in their class is doing. If their group of friends interacts only online, what are the consequences for my child if I prohibit them from joining in? Isolation? Loneliness? Loss of self-esteem? There are very real costs that should not be underestimated, which is why the state needs to step in. Members will not often hear me say this, but the state needs to step in and remove the option for all, helping parents across the country who want the best for their children without the downsides.

[Kit Malthouse]

My hon. Friend vividly illustrates the problem with this kind of collective action and peer pressure. Has she reflected on the fact that it is not just the addictive nature of the application that is pulling in our kids, but the fact that they are free, and therefore everybody is encouraged to get them? We then get 100% coverage, and it is very hard to deny them to our child, if they will be the only child without.

[Rebecca Paul]

I concur with everything my right hon. Friend says. It is completely accessible to all our children, so it is very hard for one child to be kept separate from it. That is why it is important that we address it.

However, increasing the digital age of consent is just the first step—we have so much more to do. We also need to ban smartphones in schools for children under the age of 16. On a typical workday, 42% of older teenagers say their smartphone is distracting them from schoolwork, and half say that social media has distracted them enough to impact their grades. Notably, only 11% of schools are genuinely smartphone free, and children at these schools get GCSE results one to two grades higher, so there is clearly a big upside to banning smartphones in schools. I urge the Government to seriously consider implementing this much needed restriction, which would be a game changer, protecting children and improving educational outcomes in one fell swoop. Our schools need this ban in statute, not just in guidance, in order to be able to effectively police and enforce it. I pay tribute to Smartphone Free Childhood for all its work to raise awareness on this important issue.

In closing, I hope that Members will support the Bill today, which would move us forward in our mission to protect our children from an increasingly insidious online realm that they are simply not equipped to navigate. I also hope that this is just the beginning, and that in moving forward we will see the digital age of consent raised to 16 and a ban on smartphones in school. The value of those two changes alone would be huge for our society, and would safeguard the wellbeing of this and future generations of children. I cannot think of anything more important.

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

Debate between Rebecca Paul and Kit Malthouse

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

My hon. Friend makes the point powerfully. I say to everyone in this Committee—we had this discussion yesterday—that I am not opposed in principle to the concept of assisted dying, but I see my role here as to protect the vulnerable. That is what I am trying to do, and I know everyone here wants to do exactly that. I cannot really see any downside to these amendments. Why would the Committee not want them included, if we want to protect the most vulnerable? Yes, it may put a bit more onus on clinicians, because they would need to look for a lower level of coercion. But that is absolutely right—of course they should have to do that. We are talking about assisted death. It is really important that we have a higher level of consideration.

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

I understand that much of the difference between us on this may founder on our perception of what is actually happening. She speaks of suicide, and to some of us—certainly to me—suicide is a healthy person taking their life, but what we are talking about is somebody who is seeking to take control of their inevitable death in these circumstances. For me, those two are qualitatively different.

I am concerned about my hon. Friend the Member for Reigate injecting an element of jeopardy into what should ordinarily be normal conversations with one’s family. For example, I could see a point at which, if I were in those circumstances and was thinking about seeking assistance to end my life, I would discuss that with my wife: “Darling, am I doing the right thing? Is it the best thing for the kids? I think I’m going to have a horrible death, and I’m trying to decide.” We heard from families—and have done over the last 10 years—who, very often in anguish support their loved one, even to the extent that they are willing to break the law. As my hon. Friend the Member for Harrogate and Knaresborough said, the line between support and encouragement is quite fine. If somebody were to come forward and say, “Well, I’ve spoken to my family. They all think I am doing the right thing”, could that not be interpreted as encouragement? I am conscious that we should not try to police what should be open and natural discussions between families in a way that injects jeopardy for them and the person to the extent that they might start to modify what they say to the doctor to ensure that they get the outcome they want.

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

Debate between Rebecca Paul and Kit Malthouse

Tuesday 11th February 2025 Public Bill Committees

[Kit Malthouse]

I understand my hon. Friend’s point, but we are talking about people who do not have much time. We have to remember throughout this debate that we are talking about people who have limited time; they have been diagnosed, and their prognosis is six months or less. In fact, the experience from overseas is that quite a lot of people come to assisted dying beyond six months. We are operating on the basis that suddenly everybody at six months decides they are going to apply for it. Quite a lot apply with just days or weeks to go; time is therefore important to them, and so it should be to us. I am concerned that the definitions interfere with that.

Secondly, there is a distinct moral issue about the denial of services, particularly medical services, to groups of individuals based on their circumstances. We do not currently do that. We do not deny medical services to prisoners because they are prisoners. We believe it is a sign of a civilised society that they access the same healthcare as everybody else through our national health service. The same is true of those homeless groups. That includes allowing them to make the kind of decisions that we have talked about in the previous debate: decisions about life-threatening surgery and about the continuation of their life. It is certainly the case, as my hon. Friend will know from his work in prisons, that a number of prisons have developed hospice facilities within the prison to deal with end-of-life issues. Indeed those that do not have hospice care work closely with NHS palliative care outside and very often bring in specialists to deal with end-of-life issues in the prison.

[Rebecca Paul]

Some incredibly important points have been made. I would like to give an example. Let us consider someone who is homeless. Perhaps they are staying with friends, as my right hon. Friend said. If they find themselves to be terminally ill, they may well face difficulties in accessing palliative care and getting the right treatments simply because they are homeless. This is about protecting that vulnerable group from choosing assisted dying simply because they are in a precarious and difficult situation and assisted dying seems like the best option in the light of lack of palliative care and their current circumstances. Would my right hon. Friend concede that that is what my hon. Friend the Member for East Wiltshire is trying to address?