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

Kim Leadbeater Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Rebecca Paul (Reigate) (Con)]

I rise to speak to new clauses 17 and 21 and to the four associated amendments. There is a lot to say, so please bear with me, but I will do my best not to repeat myself.

How exactly will the panel operate and function? I appreciate some of the explanations provided by the hon. Member for Spen Valley, and I look forward to hearing from the Minister on the point, but I have concerns about exactly what the panel will do and how it will do it. I will do my best not to repeat what others have said, but I reiterate the concerns as to whether it is indeed a better safeguard than the High Court one that was originally envisaged, given that it will have no full judicial role.

On a practical level, I question whether it is even feasible to find sufficient numbers of psychiatrists and social workers who are able and willing to perform this very burdensome role. As we all know, social workers do an incredibly important job, but people with their skillset are in extremely high demand. The hon. Member has made it clear that she is removing the High Court safeguards not because of the capacity concerns raised in oral evidence in January, but because she believes that this is truly a better and safer model.

I am also concerned that something that was originally meant to bring judicial oversight into the process has been replaced with something that is not judicial. I welcome more involvement from psychiatrists and social workers, who have a key role to play in the process, but I have concerns about whether the panel is the right place for it. Its expertise would be more valuable earlier in the process, when the co-ordinating doctor and the independent doctor are performing their assessments, rather than at the stage with the legal oversight component. A panel’s involvement in a truly multidisciplinary approach during the clinical stage of the assessment process would have been a gold-standard safeguard, but unfortunately that approach was not put on the face of the Bill.

How the panel will operate is an issue of great significance. If we do not flesh out the detail now, when will we? We must have this conversation. I have looked for this information in the new provisions. According to new schedule 2,

“The Commissioner may give guidance about the practice and procedure of panels.”

That is all there is. I cannot see any further information. Disappointingly, it is not even that the commissioner “must” give guidance—it “may”—so the operation of panels may change depending on who is in the role of commissioner. Given that this is a new approach and process, I urge the promoter and the Government to ensure that it is adequately fleshed out to avoid ambiguity.

When I imagine the panel, I am not sure what I am supposed to be imagining. Is it an administrative process—three people checking the papers—or is it more like a court, calling in evidence? Yesterday, the hon. Member for Banbury eloquently set out the practical realities of the new provisions with regard to witnesses. According to new clause 21, the panel “must hear from” at least one of the doctors, but it does not need to question him or her, so what is it exactly that the panel is required to hear? What does “hear” mean, and does it cover anything specific? Does it cover all the items in new clause 21(2), or just some? The new clause does not specify.

It is the same for the patient. The panel just needs to “hear” from him or her; it does not need to question them. As I will come to shortly, in exceptional cases, even the patient will not need to be heard from. Again, I would be grateful to the Justice Minister for clarity on what “hear” means and what she would expect would be covered.

We do know that the panel must be “satisfied” of the relevant matters, yet how it is to be satisfied, and even what that means, is not clear. The only person who must be heard from is either the co-ordinating doctor or the independent doctor—just one person. That may be fine, or it may not, but I put it on the record here, because it is important that we are clear-eyed about it.

Compare the process with an employment tribunal. Someone litigating an employment claim would know well in advance the rules that the tribunal would apply, what test the tribunal would apply to the facts, the legal representation they can have, and how and on what basis they can appeal. That kind of clarity is essential, but I cannot find it in the new clause. I also do not know whether the panel is inquisitorial or adversarial.

[Kim Leadbeater (Spen Valley) (Lab)]

I am very happy to clarify that the panel is not adversarial, but inquisitorial and investigative.

[Rebecca Paul]

I thank the hon. Member for that confirmation. Now that I have that clarity, I will skip on.

One aspect of the panel that gives me cause for concern is that the panel would not hear from the patient themselves where there are “exceptional circumstances”. What are exceptional circumstances? The Bill does not say or provide any guidance. Many people with a terminal diagnosis who are seeking assisted dying could consider their circumstances exceptional; many undoubtedly will be too unwell to attend. That means that such panels could be making these decisions based on testimony from only one doctor. I am not for one second suggesting that people on their deathbeds should have to attend a panel—that is the point of exceptional circumstances—but I urge the promoter and Ministers to ensure that the much-need clarity around the meaning of the term is set out in order to reduce ambiguity in this area.

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[Rebecca Paul]

Again, I am not sure I agree that that is what I am here to do today. I think my job is to set out the strengths and weaknesses of the proposed amendment, and I do think that the High Court judge safeguard, on the face of it, was probably safer. I appreciate, value and truly welcome what the new clause attempts to do by bringing in psychiatrists and social workers, but it has come in at the wrong phase of the process. I am not sure we are really getting the value of that expertise at the judicial point; we would have got that value at the clinical stage.

I ask Members to take what I am saying in the good faith that it is meant. My intention is to make sure that the Bill is as safe as possible. I do not profess to have all the answers, but I do have questions, and sometimes it is useful to ask questions, because there are others here who can answer them. I hope that, by asking questions when we are uncertain whether something is the right way forward, we will get a stronger piece of legislation.

[Kim Leadbeater]

The hon. Member is absolutely right that we are here to ask questions, and I appreciate those questions being asked. On what happens earlier in the process, I hope she is reassured by the fact that we will now have compulsory referral to a psychiatrist if there is a doubt about capacity, and we have specified in the Bill doctors consulting other health and social care professionals, to provide for a holistic approach earlier in the process.

[Rebecca Paul]

I absolutely welcome those amendments. I do think they improve the safety of the Bill. As I have mentioned, I would have liked to see a truly multidisciplinary approach. At the moment, we have just included something in the Bill, as the hon. Lady says, stating that a doctor can refer to another specialist if they so wish. I would have liked to see that team pulled together, and that recognised in the Bill—we heard strong oral evidence about that.

[Kim Leadbeater]

The other point I would reiterate is that none of that stops happening. We have heard from professionals and experts that that happens. Someone who has cancer will have a multidisciplinary team around them as part of their natural treatment process. Nothing in the Bill stops that happening.

[Rebecca Paul]

I take that point. In an ideal world where our public services were not under pressure, I might be more reassured, but I am a local councillor, and I am well aware how difficult it is to get social workers involved in all the things that they need to be involved in, because they are spread so thin. The hon. Lady lays out very well how things should work, but when I take off my rose-tinted glasses, I am concerned that they will not work like that in the real world. That is why I always go back to putting things in the Bill, because that forces them to happen—doing so here would force that treatment to happen.

The Committee will be pleased to hear that I now turn to my amendments—but I am afraid there are four of them, so bear with me. Amendment (a) to new clause 17 may be one of the most important amendments that I will speak about. This is something that I feel very passionately about. One of the most important questions we should ask is how the panel might deal with a family member with concerns, for example, that a relative was being coerced. Would the family member be afforded the status of a party to proceedings? Would they have a right to see the relevant documents before the panel? Would they have a right to be informed that a panel was taking place? If they are not a party to proceedings, is their status that of a witness? If they are a witness, do they have the right to observe proceedings when a panel sits in private? Do they have a right to be heard by the panel? Again, I am asking questions. I am not necessarily saying one way or the other what the answer should be, but those are questions I have.

None of this is laid out in the new clauses that we are considering. In fact, I suggest that in the struggle to balance autonomy with the rights of impacted others in the Bill, autonomy is very much winning the fight. I was struck yesterday by various Members setting out their fears that the first a family could know about an assisted death is when they are called upon to make arrangements for the burial. That would be an awful situation, and I strongly believe that families and loved ones should not be cut out of the process without good reason, especially when, no doubt, they will be required to bury the person and pay for it, as I assume the state will not take on that responsibility. I suggest that this point on funeral arrangements and expenses needs further thought as the Bill progresses.

From reading the Bill, all we know is that the panel may

“hear from and question any other person”.

There is no mechanism for family members to have a right to be heard or even to submit information. That needs to be rectified. The panel could reach its conclusions without hearing at all from the family. That is unacceptable. If someone’s mother, father, son or daughter were going in front of an assisted dying panel, that person would at least want to know and be clear about their rights and available options to feed into the process.

We then come to the big issue. What if a mistake is made and a relevant piece of information is not provided to the panel by the people it hears from? My amendment (a) to new clause 17 seeks to help the panel to avoid making the wrong decision, and give time for it to be remedied before the patient is dead.

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To be clear, I am not saying that that is a situation in which an appeal might have been upheld. What Professor Kissane’s story demonstrates is that families can see things very clearly, in a way that professionals, even with training, cannot. Families know the person well, they understand their relationships and they know the subtleties of the situation.

[Kim Leadbeater]

Is the hon. Lady reassured by the fact that, under the Bill, coercion becomes a criminal offence with a serious prison sentence? If any family members are in any doubt as to whether coercion is taking place, it is straightforward: they go to the police.

[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.

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[Rebecca Paul]

I completely agree. While I was preparing my speech, as is often the way, I found myself wishing that I had tabled an amendment to add a legal requirement that the family be able to feed into the panel and share information. Perhaps that is something that can be picked up at a later stage. The nature of the process is that as we debate these things and think about them in detail, other ideas come through.

[Kim Leadbeater]

The hon. Lady mentioned a few moments ago that the family would make such an appeal only if there was new information, but her amendment does not say that, and it has no explanatory statement. Could she clarify what she meant?

[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.

--- Later in debate ---

This Bill is really different from the legislation used in Canada, because Canada requires an applicant to be facing unbearable suffering that cannot be relieved. The Bill before us requires a terminal diagnosis, so it does not open up the question of other kinds of suffering and whether they can be relieved. However, it will certainly confront the panel with the same kind of dilemma: what should be done when an applicant wants an assisted death, not because of illness, but because of personal vulnerability or social issues—housing problems, for instance? The panel will know that, if that person’s housing problems or some other crisis were to be resolved, the desire for an assisted death might diminish or even evaporate. It will nevertheless have to decide whether to issue a certificate confirming eligibility for assisted death.

[Kim Leadbeater]

I might have misheard, but I believe the hon. Member asked what happens when a patient asks for assisted death not as a result of illness. If that was the case, then they would not fall under the criteria of the Bill.

[Rebecca Paul]

I am making a point regarding if a person fitted the diagnosis in that they are terminally unwell, but it is actually the fact that they have got nowhere to live that is really driving the decision rather than the terminal illness. My apologies if that was not clear.

In Oregon there was the case of Barbara Wagner, who had recurring lung cancer. She had been prescribed a drug, Tarceva, which had an excellent record. It increased patients’ one-year survival rate by 45%. Oregon’s state Medicaid provider sent Wagner a letter saying that her insurance plan would not cover the drug, but would cover other options, including assisted dying. Wagner said:

“I got a letter in the mail that basically said if you want to take the pills, we will help you get that from the doctor and we will stand there and watch you die. But we won’t give you the medication to live.”

Those are her own words, not my words. Recently in Australia, similar cases have been reported of people choosing assisted dying because they were put on too long a waiting list for a home care package. One man said of his mother:

“Her pride wouldn’t allow any of her boys to take care of her or to bathe her so she got approved for the assisted dying”,

and a few months ago proceeded with it.

There are many other situations where everyone would benefit from the panel having broader discretion. Think of one of the cases I talked about earlier—and have done throughout the various Committee sessions—where somebody appears to be a possible victim of coercion, or a case where someone with diabetes, for instance, wishes to bring themselves within the six-month definition by stopping treatment, or someone with anorexia brings themselves within the definition by stopping eating and drinking. The capacity safeguard would not defend them. The courts have found that people have capacity to refuse lifesaving treatment, even if their decision is strongly influenced by other factors.

Hon. Members may worry that giving the panel discretion is too open-ended. The truth is that, in our legal system, discretion is the norm. Whether in sentencing guidelines or in custody cases, the law nearly always recognises that sometimes a general rule has to be departed from. If the panel is compelled to make its decisions only by a checklist with no other option, the Bill is saying that the panel is less trustworthy than the courts. If this panel is to be a safeguard, we should be clear about how it functions. It needs to be open to correcting mistakes. It needs to have a clear standard of proof, which will protect people and not just hastily steer them towards assisted death, and it needs a wide degree of discretion if it is truly to be more than a tick-box exercise. I hope the Committee will agree and support these amendments.

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[Daniel Francis]

I thank my hon. Friend for that statistic, which I was not aware of. It relates back to concerns that I have had through the process, particularly on learning disabilities and how a family member finds out during the process what processes would be open to them. In my opinion, it is unclear how the proposed panel fits into our legal system. Again, there are all kinds of quasi-judicial panels that do fit into our legal system, and they have an appeal process, of course. They would normally see two parties in a case. I hear what has been said this morning about Spain. It was put to us in oral evidence from a supporter of the Bill that we should look at that part of the Spanish model about having both sides of the process, although I accept that Spain has a very different legal system from the United Kingdom.

[Kim Leadbeater]

I am interested in exploring the characterisation of the two sides referred to, because this is not about two sides. This is about an individual patient with a terminal illness. I am just interested in how we can explore that a little further.

[Daniel Francis]

I hear that. As my hon. Friend knows, yesterday when there was an amendment on individual autonomy, I voted the same way that she did. But I will put the scenarios that I put in that debate yesterday when I came to my decision. The scenario that I have always considered is: what if the person with a learning disability in their 40s or 50s says, “I want to make the decision to relieve the burden on my parent in their 70s or 80s”, and the parent in their 70s or 80s is not involved in the process, but finds out about the process and there is no way they can intervene in the process? I hear what was said about JR, but there is no way, as is laid out in the Bill, that they can then intervene in the process and say, “There has been a mental capacity assessment, but we think that, given there is a borderline level of capacity, there may have been a position where a doctor has had to, under the Act, assist that decision to be made.” What would be the legal process for the parents in that case? These are the scenarios. As Members know, I am not somebody who opposes the principles of the legislation, but these are the scenarios that have brought me to this place.

[Kim Leadbeater]

The quick answer is that there would be an injunction. I hope my hon. Friend will also be reassured that the panel is coming towards the end of this very long process. In the situation he describes, the patient would have gone through all the other stages with the doctor. I imagine in that situation, in a psychiatric referral, the doctor would have said, “Would you consider speaking to your next of kin?” There are a lot of other stages prior to getting to this point, which I hope provides some reassurance.

[Daniel Francis]

I hear that. As my hon. Friend knows, I supported amendment 6, as she did, and other amendments that strengthen the Bill in that way. I accept the right to autonomy. The hon. Member for Harrogate and Knaresborough gave the example of an appeal in Spain, but I do not think the fact that a religious group was funding the appeal in one case is an excuse for taking that right away, because there will be other people in Spain who have genuine concerns and want to go through the appeal process.