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

Kit Malthouse Excerpts

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.

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[Jack Abbott]

In case I was not clear enough about my misgivings about the judicial stage, I will set them out again. In my view, the people making a High Court judgment probably do not have the breadth of knowledge and experience to pick up a number of the things that we have debated over the past few weeks. One cannot expect legal professionals also to be experts in palliative care, psychiatry or whatever it might be. I was saying that I had misgivings for that reason and that the approach that the panel is taking is more broadly in line with some of the Committee’s misgivings. It is an enormous improvement. I was not saying that we should remove that stage, dilute it or anything else. In fact, I am saying that it is much more robust and that it puts in the right safeguards, while getting the balance between safety and a recognition that people do not want to spend the last days of their life in perpetual meetings.

We have spoken about coercion a number of times. It is an incredibly powerful and important argument. I am sure my comments will be misrepresented, but we have to be clear that in some abusive relationships—which are pernicious, evil and subtle, as an hon. Member has mentioned on a number of occasions—someone might encourage their partner, or whoever it might be, not to go through with assisted dying so as to extend their days in pain and agony. We have to recognise that abuse takes many forms and is endemic in our wider society. That goes back to my point about why it is important to have a wider range of expertise on the panel. It is crucial to have psychiatrists and experts in fields beyond law. It is important to look at new clause 21 not in isolation, but in parallel with other amendments that we have agreed to, such as amendment 21, which specifically refers to coercion, training and so on. It is incredibly important to look at it in the main.

Finally, I will talk broadly about the questions of capacity and burden. We have spoken about not being able to police discussions. I would not necessarily go that far; I recognise that the relationship between the assessing doctors and the patient in the immediate term should approach this in the right way. However, these conversations take many forms and can be articulated in many ways, beyond what we can legislate for.

We have talked about the question of burden. If I, as someone who has just received a terminal diagnosis, have said, “I don’t want to spend my remaining days in absolute agony and fear, and I don’t want my family to go through that either,” that should not preclude my going through the decision-making process. However, I appreciate the nuance and the difference between that and someone saying or hinting that the decision has been taken out of their hands.

Another reason could be depression. I am sorry to put this incredibly glibly, but if I got a terminal diagnosis, I would feel pretty depressed about it; I might also be clinically diagnosed as depressed. Some previous amendments were about whether my past medical history—let us say that I had suffered from depression a number of times in my life—should preclude me from going through with the process.

The argument about family and friends saying, “Actually, Jack has suffered from depression at two or three moments in his life—maybe he should not access this,” although I think I am making the right decision, is powerful. To a degree, we have to rely all the time on a doctor, psychiatrist or anyone else to use their good professional judgment as to whether a person’s depression or otherwise is impairing their fundamental judgment on going down this route. I do not think that we can ever legislate 100% for that. We have to trust and rely on good practice, while giving people the training, skills and safeguards that we need to go down this route.

There is particular interest in the role of the commissioner. It is fairly regular procedure to have individuals being ultimately held to account in their various guises across the board. If there were not that single point of reference, people would be equally upset that no one could ultimately be held accountable for the wider system. It would be the same if the High Court system were retained; people would quite rightly ask who is actually overseeing the process. As well as the commissioner, with safeguards, the people ultimately responsible would be the Prime Minister, the Secretary of State for Health and Social Care or the appropriate authorities.

One question that perhaps my hon. Friend the Member for Spen Valley can answer is what the role is for the commissioner in Wales. Would there be separate commissioners for England and for Wales, or would the Secretary of State appoint one commissioner for both jurisdictions?

Amendment (e) to new clause 21, tabled by my hon. Friend the Member for Filton and Bradley Stoke (Claire Hazelgrove), is on a similar theme to my amendments 414 and 415; I am grateful to my hon. Friend the Member for Spen Valley and the rest of the Committee for supporting them in order to ensure that there is an informed consent procedure in the Bill. The amendment seeks to ensure equity for everyone who otherwise meets the eligibility criteria and who wishes to request assistance as set out in the Bill.

The Bill makes provision that the eligibility panel

“may hear from and question, in person, the person who made the application for the declaration.”

It clarifies that

“‘in person’ includes by means of a live video link or a live audio link.’

That is sensible because, for a number of people, travelling to a specific venue simply would not be possible, owing to their medical condition. However, the challenge around equity arises because several terminal illnesses also mean that people face significant, prolonged and unplanned pain episodes. It may make appearing before a panel via a live link at a specific, booked time slot all but impossible for some people. It would unduly and unfairly delay or at least make more difficult their wish to request consideration for assistance while they are in pain. Further panel appointments may not be straightforward to arrange, because of the number of people who would need to attend. A similar pain episode may happen again. Pain is not plannable, as we all know.

I am sure that none of us in this room thinks that the unintended consequence of excluding people who suffer from such pain episodes is in keeping with the intention of the Bill. This simple but important amendment would ensure that there is provision, where necessary, for otherwise eligible adults to pre-record their answers to the questions set by the panel in advance.

[Kit Malthouse]

The amendment is very sensible, not least because there are some conditions in which people experience a very significant decline at the end. In a matter of days, they may lose the ability to speak, while retaining capacity, so the ability for people in a small number of cases to give pre-recorded answers is incredibly sensible.

[Jack Abbott]

I agree wholeheartedly. It is important to emphasise that this provision will apply only in a relatively small number of cases, but it is a very important one. It would be subject to clear guidance developed following the passage of the Bill, as with the schedules and other related items, and would be subject to the same safeguards as the live link provisions already included in the Bill. Essentially, it would provide equity of access to request assistance for all otherwise eligible adults, no matter the pain or any other specifics of their terminal condition. Nobody should have to wait longer because of the pain that they are in.

My hon. Friend the Member for Filton and Bradley Stoke has tabled the amendment based on her experience. A close family member of hers, who has a terminal illness, has been experiencing pain episodes that would make it impossible to plan to join a meeting with a panel at a specific time slot via a live link. To require her to do so would only increase stress and distress at what is already an incredibly difficult time for her and her family. If the Bill becomes law, it would not be right to exclude anyone eligible from being able to request assistance as a result to the impact of the terminal illness itself. I encourage Committee members to join me in supporting the amendment.

I appreciate that bandwidth has come up several times. I admit candidly that it was a small factor in my thinking when I voted on Second Reading. By “bandwidth”, I mean the bandwidth of the professionals we are asking to do this work. By and large, I think we have done very well to keep politics out of this room, which is extraordinary, given the length of time that we have spent in here. However, there were a couple of moments of candour from Opposition Members on the Committee when they expressed concerns about whether the NHS has the capacity—