Terminally Ill Adults (End of Life) Bill (Twelfth sitting)
Kim Leadbeater ExcerptsTuesday 25th February 2025
(1 year, 5 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
Naz Shah
I completely agree, which is why the amendment tabled by my hon. Friend the Member for York Central (Rachael Maskell) is very important. I urge the Committee to accept it, as it would ensure the provision of a palliative care consultation. As my hon. Friend the Member for Spen Valley has always said, it is about having a holistic approach—we need to get back to that.
In the evidence sessions, we heard that palliative care social workers can play a pivotal role in supporting patients. Those from other professions—psychological services, chaplaincy services, physiotherapists, occupational therapists and speech therapists—along with specialist nurses and medics can all contribute to the care of a patient at the end of life. In discussions with palliative care specialists who listened to the debate on 29 November, they were perplexed by the symptoms that were graphically described in the case studies, and cited poor care as the reason for them. Many such symptoms can be controlled, and they were shocked that such examples of poor care were presented as a reason for assisted death, rather than for making good quality palliative care available to all patients.
We further heard evidence, especially from Dr Jamilla Hussain, that access to palliative care is inequitable. We know that those from minoritised communities and from low socioeconomic backgrounds have poorer access to good palliative care, and that people can have poor access depending on where they live, and on the day of the week or the hour of the day. Through this amendment, we want to ensure that everyone who is seeking an assisted death, or who has it suggested to them, as this Bill allows, is able to access a consultation or consultations with a palliative care specialist, who can dispel the myths while supporting them with their end-of-life plan.
Kim Leadbeater (Spen Valley) (Lab)
My hon. Friend talked about the stories that we heard on Second Reading. Does she acknowledge, as Dr Sarah Cox from the Association for Palliative Medicine said, that there are cases where palliative care cannot meet a patient’s needs? We have a lady in the Public Gallery this morning whose mother had a horrible death, having had ovarian cancer and mouth cancer; she had to have her tongue removed, so she could not eat and drink, and she essentially starved to death. We have to be careful not to dismiss those cases, because they are real stories of real human beings, and we have to acknowledge the limitations of palliative care.
Naz Shah
I absolutely agree. Nobody in this Committee, from what I have heard over the weeks of evidence that we have taken, is suggesting in any way that we are dismissive of people who actually need an assisted death and would benefit from the Bill. As I have said previously, and as Dr Jamilla said very clearly, there are some patients who clinically would benefit from an intervention such as an assisted death. I came on to this Bill Committee to ensure we have the best legislation and safeguards in place. The Bill currently does not ensure that people are aware of the options. This amendment would ensure that people have considered all options and can make an informed choice. If there is no requirement to speak to a specialist, I am afraid the Bill would do a disservice to those who might want to use it to seek an assisted death by not presenting them with those options.
In evidence from the representative of the Royal College of Psychiatrists, we heard an example of somebody who was in lots of pain and decided to seek an assisted death, but changed their mind once they understood that their pain could be alleviated. That is what this amendment is about. I urge the Committee to vote for it, because it is fundamental that we enable people to make an informed choice and to understand the services and options available to them.
Dr Shastri-Hurst
I do not think that offends the principle at all. Whether I was working within the NHS or the private sector, if a patient requested an onward referral to a different specialist, I would action that. If I did not have the requisite skills or knowledge, or felt that they would be better served by a different speciality, I would refer on to another clinician. I do not see how it would be treated any differently in the NHS than it would be privately. I am afraid that I do not follow that argument.
Kim Leadbeater
It is a pleasure to serve under your chairship, Mr Efford. I will address the amendments in two different ways. I will start by looking at the technical issues around amendment 281, and then I will look at why I believe, as other colleagues have said, that the amendments are not necessary given what already exists both in the Bill and in terms of good practice in our health service.
First, I worry that amendment 281 will not have the effect that my hon. Friend the Member for York Central (Rachael Maskell) intends. Clause 1(2), to which the amendment relates, provides an overview of the other clauses in the Bill, and therefore cross-refers to sections 5 to 22. Clause 1(2) does not impose duties on persons in and of itself. The duties are set out in the later clauses to which it refers. Adding an additional subsection to clause 1, as proposed by the amendment, would not result in a requirement that the person must meet a palliative care specialist. That is a technical detail to reflect on.
In addition, the term “palliative care specialist” is not a defined term. Palliative medicine is a designated speciality of the General Medical Council, and a doctor can apply to be entered on to the GMC specialist register for the speciality provided that they have the specialist medical qualification, training or experience. However, the current wording of the amendment means that it is not clear whether it is seeking to require the person concerned to meet with one of those specialist doctors, or whether a meeting with another medical professional specialising in palliative care—for example, a specialist palliative care nurse—would suffice. There is no equivalent specialist register for specialist palliative care nurses. It is a technical issue, but an important one.
I also point out that my hon. Friend the Member for York Central has put an incorrect explanatory note with the amendment, which refers to terminal illness. That might just be an error, but I wanted to point that out.
Coming on to the broader grouping of the provisions: as has been said by colleagues, the amendments are tabled with really good intentions by someone who cares passionately about the palliative care sector. But they are not necessary given the process that is already set out by the Bill. Both doctors already have to discuss all treatment options, and must make a referral if they have any doubt about the diagnosis. It is very clear from clauses 4 and 9 that both the co-ordinating doctor and the independent doctor must discuss all treatment options with the patient, so they will have all the options laid out before them. That is really important because we have to think about what happens in reality. This initial discussion, in many cases, may actually take place with a palliative care doctor, and in many cases it will be highly likely, given the nature of the conditions we are talking about, that the patient may already be receiving treatment or advice from a palliative care team.
We seem to have created a narrative where this conversation is happening in isolation. Actually, as other colleagues have alluded to, we have a patient-centred approach in our healthcare. This person does not just suddenly arrive and have this one random conversation. I am sure medical colleagues will correct me if I am wrong, but if a doctor is dealing with a condition of which they have very limited knowledge, one of the first things they would do would be to refer to a specialist.
As is covered in clause 9(3)(a), if the doctor has any
“doubt as to whether the person being assessed is terminally ill,”
they must
“refer the person for assessment by a registered medical practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question;”
Clause 9(2)(a) also states that both doctors must assess the patient’s
“medical records and make such other enquiries as the assessing doctor considers appropriate;”
They can speak to anyone they want to, and they would in reality—of course that is what they would do. They would not sit there and think, “Oh, I don’t know enough about this condition so I will just keep going.” They would refer to specialists.
It is also really important to acknowledge what goes on at the moment. I was looking at some research last night: NHS England also has comprehensive guidance on personalised palliative and end-of-life care through a comprehensive personalised care model. None of this stops with the introduction of assisted dying as a choice for people. It would continue to happen. Patients are already getting that really good level of care.
Danny Kruger
The hon. Lady is making a very good speech about how things should work and how things do work, in many cases, when the NHS does its job brilliantly. First, I want to correct the hon. Lady: subsequent amendments do impose the duty that is consequent to these amendments to clause 1, so it would be an obligation. Surely that is the point to make: what if the doctors are not as brilliant as she suggests? What if there is not an expectation that they should definitely seek expertise that they do not have themselves? To the point made by my hon. Friend the Member for Reigate, what if this service is provided outside the NHS by an independent charity or private provider set up explicitly to facilitate people’s assisted death requests, and has no intention of referring people to palliative care if they do not ask for it themselves? Would she be content for a private provider to refer somebody for an assisted death without a palliative care referral?
Kim Leadbeater
I do worry about the lack of faith in our professionals. We have medical practitioners on the Committee and we have heard stories of the very good practice that happens, so it concerns me that we are so cynical about our system. Ultimately, we have to put faith in our professionals to do their job and to take that patient-centred approach, as I firmly believe they do. Dr Sarah Cox from the Association for Palliative Medicine said in her evidence to the Committee:
“In clinical practice, we make all these decisions in multi-professional teams…shared decisions are much better quality, much more robust and much safer.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q90.]
I absolutely agree with her, and that would continue to be the case.
Kim Leadbeater
But it does not say that at all. It actually says that they have to refer, and that they have to consult with other people. That is part of the process. That is exactly what happens now. Professor Aneez Esmail, who is the emeritus professor of general practice at the University of Manchester and who has been a practising GP for over 30 years, told us in his evidence to the Committee:
“In terms of holistic care, currently when I look after dying people I never do it on my own; I am with district nurses, Macmillan nurses, or on call to a palliative care consultant. There is already a team of people looking after dying people…palliative care…works very well and it works in a multidisciplinary way. I think that this legislation will allow a much more open discussion and proper monitoring. It will improve training, guidance and everything else. People say that it will enhance palliative care, and that is what I think will happen.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 171, Q219.]
Indeed, as was referred to by the hon. Member for Solihull West and Shirley, if we consider the training included in the Bill, which doctors will undergo as part of the introduction of assisted dying, evidence from other jurisdictions shows that these are very detailed conversations where health professionals work together in the same way as they do at the moment in end of life care and decision making. As I have said repeatedly, the training is fundamental. I agree absolutely with Dr Rachel Clarke, who told us:
“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
I agree 100% and I have embedded that in the Bill.
Sean Woodcock (Banbury) (Lab)
My hon. Friend quotes Dr Rachel Clarke. I was profoundly moved by her evidence. She was very clear that she wanted to talk about the NHS as it is, not as we would like it to be. Despite the efforts the Government are putting into bringing down waiting lists, there is still extreme time pressure on doctors. There are extreme waiting lists for people to access specialist care, which may impinge on the ability of doctors to carry out what my hon. Friend is asking. Does she accept that?
Kim Leadbeater
That brings me on very nicely to my next point, so I thank my hon. Friend for his intervention. At the moment, the Bill accommodates a two-year implementation period, which is really important because it will take time to put the procedures in place: it will take time to train people and it will take time to work holistically with the overall healthcare system. It could end up being longer than two years. If that is the case to put all the robust systems in place—to improve things, and to work holistically with palliative care and other aspects of the NHS—then that is the right thing to do, and I would be open-minded to a conversation about that.
To finish, I also note that the General Medical Council’s “Good medical practice” guide, which is the framework of professional standards, already provides that in providing clinical care a doctor
“must refer a patient to another suitably qualified practitioner when this serves their needs”.
This is what doctors do: they refer if they need extra advice; they take a holistic approach.
Kit Malthouse (North West Hampshire) (Con)
I just want to quickly point out that we have a check on the conversations that happen in the first stages. In clause 8, which covers the second doctor’s assessment, that second doctor must be satisfied that the individual has a “clear, settled” and, critically, “informed” wish to end their own life. So, there will be a doctor who is verifying that the person is informed properly about their options. My concern about the amendments is that, as the hon. Lady says, we are inserting now a third doctor into a system which, with regard to the panel, will already have three, four or five specialists involved in the assessment of the care.
Kim Leadbeater
The right hon. Gentleman is absolutely right. It feeds into comments that have already been made about how difficult we are making the process. I agree that this should be a difficult process—it should be a robust process, with thorough checks, safeguards and balances throughout—but we are in danger of forgetting the dying person at the heart of the process.
Kim Leadbeater
I am going to finish, if I may.
We need to be really careful that we take a person-centred approach, as happens now. Doctors, medical practitioners and healthcare professionals quite rightly take a holistic patient-centred approach. That approach will be further enhanced by the robust training the Bill incorporates, and by adding the extra layers of safeguards and protection. Really importantly, it would open up conversations about death and dying.
The Minister for Care (Stephen Kinnock)
It is a pleasure to serve under your chairmanship, Mr Efford.
As previously stated, my role, and that of the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, is not to give a Government view, given that the Government remain neutral on the Bill, but to outline the legal and practical impacts of amendments tabled.
The amendments are intended to add a new step in the process set out in the Bill, requiring consultation with a palliative care specialist. The purpose of amendment 281 is to require a person to have met a palliative care specialist before completing the required steps and assessments to end their life. The purpose of the amendment is to ensure that the person has understood the full range of end of life options available to them. Our assessment suggests that the present drafting, adding a subsection to clause 1(2), would not achieve that effect without further amendments to other clauses in the Bill. The amendment would increase demand on palliative care specialists and, should Members decide to amend the Bill in this way, we would need to work with the NHS and other provider organisations to assess how to operationalise it.
Amendments 298 and 299 would require the co-ordinating doctor to have received confirmation that the person seeking an assisted death has had a consultation with a specialist in palliative medicine about palliative care options before they are able to make a first statement under clause 7(3)(a). That would mean that a co-ordinating doctor would not be able to make a statement following a first assessment, and therefore refer a person to the independent doctor for a second assessment, unless the person had had a consultation about palliative care options with a palliative care specialist. As with previous amendments, the amendment would increase demand for palliative care specialists, and we would need to work with the NHS and other provider organisations to assess how to operationalise it, should hon. Members decide to pass amendments in that area.
Kim Leadbeater
On the point made by the hon. Member for East Wiltshire, the Bill does not replace what already happens, and what Dr Cox was saying was that those conversations are already happening in a multidisciplinary way. We do not take that away.
Naz Shah
One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?
Danny Kruger
The hon. Gentleman has been on his feet; I appreciate that and am very grateful for his contribution to the debates that we have had.
I simply want to make the point that what the House voted for on Second Reading was the principle of assisted dying. What many members of the public who support the Bill think they are getting is a Bill that is safe—a Bill that is restricted explicitly to people at the very end of their life, who face extreme pain and suffering as they die; who are fully informed of what they are doing; who face no questions of external or indeed internal coercion; who have the absolute ability to understand what they are doing. Those are the things that people want to see in the Bill; those are the things that we have sought to effect through the amendments that we have tabled, and which the Committee has rejected.
Very explicitly, as a result of the rejection of these, I believe, very plainly written amendments, the fact is that under this Bill you can be depressed and suicidal and still regarded as having capacity to have an assisted death. You can be very marginalised—you can be a prisoner, you can be homeless—and still be regarded as eligible. You can have been influenced or encouraged by others and still be eligible. You can do it because you feel a burden. You do not need to be in any kind of pain. You do not need to be in the tiny proportion of cases that palliative care cannot help. As the hon. Member for Spen Valley accepted in the previous sitting, you can seek an assisted death for the sole reason of saving your family money, and you would be granted an assisted death on those grounds. The fact is that in rejecting these amendments, the Committee has decided and has demonstrated that the Bill is much wider than the campaigners portray.
I want to end with this point. I think there are two ways of approaching assisted dying—two essential framings of a Bill to legalise it. One is an autonomy Bill, which simply says that if people seek help to commit suicide, within certain broad parameters they should be able to do so, and there is no question of other people interfering with that choice; if they sign the requisite paperwork, they should be able to have an assisted death. The alternative is what we might call a safeguarding Bill—one where eligibility for the procedure is strictly limited and there are very strong, robust safeguards in place to protect the most vulnerable people.
The hon. Lady, and Members speaking in support of the Bill, have repeatedly emphasised that this is a safeguarding Bill. They want this Bill to be built around safeguards for the vulnerable. They respect the arguments that we make about the dangers that an open-ended assisted dying Bill would create. But the fact is that, as we have seen in the course of the debates on this clause, this is not a safeguarding Bill; it is an autonomy Bill. It is one that allows people to proceed to an assisted death because they want one, if they meet certain very loosely drawn criteria.
Kim Leadbeater
The reality is that this Bill is both. Of course it is about personal autonomy, choice and dignity for people who are coming towards the end of their life, but it has to be safeguarded as well. It is both. If I may say so, I think that the hon. Member makes quite an unfair characterisation of the robust, powerful debate that has taken place in Committee during the time that we have spent together. I think it has been extremely well informed. People have listened intently to other points of view and opinions, and it does the Committee a disservice to suggest otherwise.
Rebecca Paul
I thank the hon. Member for his intervention, but I respectfully suggest that that is not the case and there is data. Professor David Paton found a 6% increase overall, and interestingly it was 13% for women.
Kim Leadbeater
I would be interested to know whether that data shows a link or a direct causation effect.
Rebecca Paul
I thank the hon. Lady for raising that point. I think that what has been looked at is the number of unassisted suicides. The hon. Lady makes the good point that obviously we need to look at all the different factors that could be part of that, but I am just making the point that when we look at territories that have introduced assisted dying, we find that at the point at which it is introduced, we generally see, in most territories, an increase in unassisted suicide. I do not think that we should rush to disregard that. We need to recognise that in helping a small group of people at the end of their life, which undoubtedly this Bill will do, there will be a price to be paid. That price will be paid by our young people and other vulnerable groups.
I will not vote in favour of clause 1—I do not think that there will be a Division on it anyway—but I will not oppose it either, for the reasons that my hon. Friend the Member for East Wiltshire set out. I understand that it is the key clause in order for us to progress and continue the debate, which is what Parliament wishes us to do, but I hope that the Committee will be more receptive to improving the safeguards as we progress through the Bill. The amendments really were tabled in good faith. We did our best to write them in a clear way, but obviously the private Member’s Bill process makes that more difficult. This is not a Government Bill, but we are all doing the best we can to table amendments that would improve the safety of the Bill.
Kim Leadbeater
I am interested to know where the hon. Member has got the idea that someone is going to scrap the six-month prognosis from.
Danny Kruger
Well, if the hon. Lady will say that she will never, at any stage, support a proposal to extend it beyond six months, I will be very glad to hear it. My concern is that we already have amendments tabled to do exactly that, which we will be debating shortly. I hope they will be rejected, but my confident expectation, on the basis of other countries, including the Australians who gave evidence to this Committee, is that the six-month safeguard will soon be seen as a barrier to a human right, because there is indeed no logical basis for such an arbitrary date.
The people who currently deal with the six-month prognosis, in the context of benefits and pensions, campaign that it is arbitrary and unworkable—rightly, I think—so I am afraid that I confidently expect the six-month barrier to be challenged in due course. If the hon. Lady is prepared to say that she would never do that, however, I would be very reassured.
Kim Leadbeater
Would the hon. Member agree that the purpose of the Committee is to look at the Bill before us? That is why we are here. I understand his concerns, his reservations and his nervousness about what might happen in future, and that is an important conversation to have, but the purpose of the Committee is to look at the Bill as it stands today; that should be the focus of our deliberations.
Danny Kruger
Yes, but I simply state on the record that I believe that this is not the end, but the beginning of a wider Bill that would follow if we passed this one. I am encouraged by what the hon. Lady says, or implies: that she does not want to go further than this Bill.
My plea to the Committee is straightforward. Let us confine eligibility to the people who the campaigners talk about: those with diseases or illnesses that are genuinely terminal. We can do more to strengthen that definition with later amendments, but, first, we have to remove the gaping hole in the fence that is this term “medical condition”. Let us remove that term.
Danny Kruger
Again, I am interested in that, because I would be surprised if that condition were not adequately captured by the term “illness” or “disease”. If not, we should seek further clarification, because we need to be very specific. Illness or disease has been adequate; it is adequate in the current law on terminal illness for eligibility for benefits and pensions. I await clarification on what is added by the term “medical condition”, because my concern is that it opens the door to frailty. Going back to Chris Whitty’s evidence, I am concerned at his suggestion that frailty should be an eligible condition for an assisted death.
I will wrap up shortly so that hon. Members have time to speak to other amendments, but I will quickly refer to amendment 181 tabled by the hon. Member for Spen Valley and amendment 11 tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool), which attempt to do the same thing as my amendments. They seek to protect disabled or mentally ill people, but they do so explicitly by disapplying the provisions of the Bill for those groups, or they attempt to do so. Only amendment 11 actually does, while amendment 181 fails to do so, in my view.
Let us look at subsection (3), which attempts to protect disabled people and those with mental disorders, but which, on closer inspection, is ineffective or even meaningless. In statutory interpretation, the first phrase,
“For the avoidance of doubt.”
indicates that the subsection does not add anything to the Bill except clarity. It is intended not to change the law that is being enacted by the Bill, but to clarify the meaning of the Bill. My point is that it does not add anything—in fact, it signals that the clause can be disregarded. It is like an explanatory note and not actually relevant to the Bill. Its effect therefore negates the point that it tries to make. In including it, the hon. Lady protests too much and exposes the weakness that the clause fails to overcome. It invites a court to disregard the protection it pretends to offer by stating that that protection has no force except what is elsewhere in the Bill.
Kim Leadbeater
I agree with the hon. Member to some degree in terms of the legal drafting. I have been advised that the expression “for the avoidance of doubt” is not generally used in a Bill if the Bill is already clear, which this is—I have been reassured by parliamentary counsel about that—but I was keen, having met disabled people and disability rights activists, to have it very clearly in the Bill that by virtue of having a disability, a mental health condition or a mental disorder, someone would not be in scope of the Bill. It was a very clear drafting decision and I stand by that decision; I think it is the right thing to do so that we are clear who is not covered by the Bill.
Danny Kruger
I am grateful to the hon. Lady; it is helpful to understand her thinking. Her amendment is an attempt to further clarify her purpose, which is to communicate that we cannot have an assisted death only because of a mental disorder or a disability. I know that other colleagues will speak to that point more explicitly.
My point is that
“For the avoidance of doubt”
is a massive signal to the courts that the subsection is meaningless. The advice was right that it is not usual to include that phrase, as it signals that nothing is being added. My concern is that it does not add anything, and the inclusion of the word “only” further demonstrates the hollowness of the protection that it purports to offer. The fact is that someone will still be able to get an assisted death because of a physical illness that derives from a mental disorder or disability. That is my concern with the later parts of the clause, but I will leave other Members to make that point.
Naz Shah
Sorry, I mean amendment 11. Thank you, Mr Efford.
I think it will be helpful to spell out what the Bill currently says, and what it would say if amendment 11 were adopted. I will also set why the amendment would provide a much stronger safeguard than amendment 181, which was tabled by my hon. Friend the Member for Spen Valley.
Clause 2(3) states:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only”
—I stress the word “only”—
“of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
If amendment 11 is agreed to, clause 2(3) will read:
“A person is not to be considered to be terminally ill by reason of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
That may seem a very small change, but it is an extremely important one.
The Bill, as presented to Parliament on Second Reading, would allow someone to qualify for assisted dying if they had a mental health condition such as anorexia nervosa and a physical condition such as malnutrition. To put it with absolute bluntness, that means that somebody with anorexia nervosa could stop eating until they suffered so badly from malnutrition that two doctors prognose that the patient is likely to die within six months. That person, under the Bill, would then qualify for assisted dying.
Kim Leadbeater
This is a really important discussion and I am so glad that we are having it—some brilliant points have been made. As someone who has worked with people with anorexia, I am very aware of the sensitivities of the condition and the issues around it. Would my hon. Friend agree that, as part of this discussion, we have to consider the capacity assessment of people with eating disorders? It is a very serious mental health condition; it would require a lot for somebody with anorexia to pass the capacity threshold for making a decision of this magnitude. It is certainly the sort of instance where I would be very surprised if a doctor did not refer to an eating disorder specialist. Does my hon. Friend agree that we have to look at the condition and how the patient should be cared for holistically?
The Chair
Order. I remind hon. Members that there are a set of amendments in the next group about anorexia. Let us not go too far down this road.
Kim Leadbeater
My hon. Friend is making a powerful point. Does she agree that the reporting and data around assisted dying are fundamental? That is why it is important that, if the law is to change in this country, we get that absolutely right. What we propose in the Bill is closest to the laws in Australia, and in my understanding there have been no assisted deaths of people with anorexia in Australia. However, my hon. Friend makes a valid point about the accuracy of reporting; we do not know whether those examples were people with anorexia who happened to have cancer as well. We just do not know, and that is not good enough.
Naz Shah
I absolutely agree that if the Bill is to get through Parliament, it has to have those mechanisms and safeguards in place, but I am sure we will come to those later. If we do not know with any reasonable degree of accuracy how many cases there have been worldwide, we cannot say where the majority of such cases have occurred. When we are told that there have been zero assisted deaths of people with anorexia in Australia, I would err on the side of caution—another witness said that there were zero deaths involving coercion.
I understand that my hon. Friend’s amendment 181 also attempts to change clause 2, but the change would still allow people to qualify for an assisted death if they had a mental disorder alongside a physical disorder. I have no doubt that this stems from a compassionate desire not to exclude—for example, someone who has mild depression and a major physical illness—but its effect is to create a major risk for people suffering from both a mental health disorder that affects their eating and a physical disorder caused by not eating. To avoid that risk, the Bill must be much more tightly worded than it was when presented to the House on Second Reading, and it must be much more tightly worded than amendment 181 would make it.
We must make it much harder in the Bill for people to qualify for assisted death by way of having malnutrition caused by an eating disorder. It is a complex problem, and I believe no one amendment will solve it completely. I have submitted two amendments with the aim of making a contribution. Amendment 11 would also make a significant contribution to solving the problem, and I urge all Members to support it.
I turn to amendment 181, tabled by my hon. Friend the Member for Spen Valley. Although the Acts mentioned in clause 2 define mental illness and disability as being taken from the clear medical model, it is not clear if she is further suggesting that a new definition should be used—for instance, the social model. Someone could have a significant impairment under a social model of disability, and for the purposes of the Bill, not consider themselves to be a disabled person. Therefore, they could qualify for an assisted death, thus rendering the provision of no worth.
It is therefore unclear what my hon. Friend is similarly proposing with regard to mental illness. Amendment 11 is needed to provide assurance that if someone does have a mental illness, then it is tightly defined and would preclude them from being able to access an assisted suicide, in case the reason they are seeking it is the mental illness and not the terminal diagnosis. I will speak further on that later.
If amendment 181 was agreed to, the clause would read that a person is not to be considered terminally ill
“only because they are a person with a disability”.
There are two obvious problems with the amendment. First, the amendment removes references to the Equality Act 2010 and the Mental Health Act, which previously defined who did and did not have a disability or a mental health disorder, but having removed those definitions, it does not then define disability or mental disorder in the Bill. What definition will medical practitioners, and indeed applicants, use to determine who does or does not have a disability or mental disorder?
Kim Leadbeater
In terms of the removal of references to the Equality Act, I was not aware when the Bill was initially drafted that cancer is actually classed as a disability. Given the fact that in some countries 70% of assisted deaths are for cancer patients, it would seem ridiculous to exclude cancer patients from having the option of assisted death. I hope that goes some way towards explaining that point.
Kim Leadbeater
The concepts of a mental disorder and a disability are well understood, and those terms are well used. In the eyes of the law, we would not need to provide a definition of those in the Bill, but the removal of the reference that would include people with cancer is an important thing to do.
Terminally Ill Adults (End of Life) Bill (Eleventh sitting)
Kim Leadbeater ExcerptsWednesday 12th February 2025
(1 year, 6 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 February 2025 - (12 Feb 2025)
Danny Kruger
There is a certain confusion about the extent to which encouragement of assisted suicide—assisted dying, under the terms of the Bill—would be legal or not. The Bill does not decriminalise encouragement either to an assisted suicide, which is an assisted death within the scope of the Bill, or to an unassisted suicide—suicide outside the scope of the Bill, as it were. What we have heard, and certainly the implication of the Bill, is that encouraging either would be illegal in principle. The purpose behind the amendments would be to ensure that the doctors doing the initial assessment are obliged to check and satisfy themselves that there has not been encouragement.
Kim Leadbeater (Spen Valley) (Lab)
I might have missed it this morning, but what definition of “encouragement” are the hon. Gentleman and the hon. Member for Reigate proposing to use? Having looked at various definitions myself, I do not think that there is a definitive legal definition, but please correct me if I am wrong. Some definitions that I have seen include: to encourage somebody, to give someone confidence or to support someone to do something. Are we saying that it would be wrong to give someone the confidence or support someone to do something? That would feel very wrong and very different from coercing someone to do something.
Danny Kruger
On the point about encouragement, I am grateful to my hon. Friend the Member for Reigate for reminding me that her new clause 5 specifies a definition of encouragement:
“an act capable of encouraging suicide which would constitute an offence under section 2”
of the Suicide Act. Encouragement is encouragement—the term exists in the Suicide Act already. It exists in case law and in statute, so the term is what it is.
Kim Leadbeater
I am very open minded on these issues, but are the amendments trying to stop someone giving someone else confidence or supporting them to do something? That would feel wrong.
Danny Kruger
We are suggesting that an application in which the applicant has been encouraged—or coerced, unduly influenced or manipulated—would not be acceptable. The assessing doctor must confirm that there has been no encouragement. That is the purpose of the amendment. I hope that satisfies.
Danny Kruger
I am trying to ensure that there will be a sufficiently broad scope that doctors must be obliged to check that there has been no undue influence, pressure or encouragement. An example would be an elderly person who has been actively encouraged: it has been suggested in all love, and possibly with perfectly decent motives in the mind of the person applying the encouragement, that it would be best for them, their family and society as a whole if they would expedite their death—earlier than would otherwise happen in the natural course of things. “Encouragement” is a more comprehensive term and concept than “pressure” or “coercion”.
Our concern is that a doctor applying the current test in the Bill will simply look for evidence of direct, fairly forceful pressure or coercion, as it is understood in the more heinous cases, with which we are all familiar, of partners applying coercive control or direct abuse. We obviously all want to exclude that, and it is already excluded. What we are concerned about here is the more insidious, subtle and—I am afraid to say—widespread pressure that the evidence from our witnesses told us about. We are concerned that it is not possible to ensure that people will be protected if the terms currently in the Bill stand.
Kim Leadbeater
I am concerned that the hon. Member did exactly what we are in danger of doing by saying, “Whether it’s under influence, whether it’s pressure, whether it’s coercion, whether it’s other things.” We are in danger of using these words interchangeably, as he just did. That is not what the law needs. The law needs certainty, with clear expressions. I think that the hon. Member also said that encouragement is a broader form of pressure, but who is saying that? Is he saying that? Is the hon. Member for Reigate saying that? Is that a legal summation? I am not entirely sure where encouragement fits in with these other points.
Danny Kruger
I am not sure that we are going to satisfy each other on this point. A lot of the evidence that we have heard conclusively asserts that there is a widespread problem of families applying—and I do use these terms fairly interchangeably—undue influence, encouragement and manipulation. Pressure and coercion form a subset of those terms. They are at the sharp end—the more obvious forms of encouragement and manipulation. Those terms exist in law, and this certainly exists in society, as we have heard from Members and witnesses. It feels to me entirely appropriate and consistent with the principles of the Bill that we are trying to ensure that the new law will only be available to people who are acting entirely autonomously, without having been in any way—however subtly—the victims of any sort of undue influence. That is the purpose of these amendments.
Danny Kruger
I emphasise that the basis of the Bill, despite what many campaigners might want, is not one of total autonomy. The Bill requires us to have some responsibility towards the applicant, and not simply to say “Do you want it? You can have it.” There are already provisions in the Bill that put an obligation on the assessing doctors and then the judge not so much to conclude that it is in the person’s best interests—I am afraid it does not have that stipulation—but it does seek to insist that they make their own decision.
As the hon. Lady said, many people make a decision and might not even be fully aware themselves that they are the subject of undue influence. They may be being deceived by their loved ones. Their loved ones might be deceiving themselves about the pressure they are putting on them, but let us just talk about a genuine intent to persuade, which does happen. In answer to the question, “Have you been coerced or pressured?”, the patient may say, “No, of course not.” But if they are asked, “Have you been encouraged?”, they might say, “Actually, yes, I have.” That should raise a very significant red flag, and it is absolutely appropriate and sufficient at that point to say, “I’m sorry, but I don’t conclude that this is an autonomous decision.”
To conclude, I refer back to the debate we have been having since the news broke two days ago that there will be an amendment to scrap the judicial stage that is currently in the Bill. If there were a High Court judge sitting at the end of this process, as we were promised and as was understood by the House when it voted on Second Reading—if there were a judge sitting over each individual case, rather than sitting at the head of a national assisted dying commission, and if there were a judge sitting in court reviewing the case properly—there might arguably be no need for the amendment on undue influence.
It is possible, as the Minister explained, that coercion would sufficiently capture the more insidious undue influence and encouragement we are concerned about. It is possible that we could strengthen the definition of coercion through guidance, or through further definition in the Bill. But if we are going to have a panel, and not a court or a judicial process at all, it is even more necessary that we insist on added protection.
Kim Leadbeater
Surely, as I thought I heard the hon. Gentleman say on the radio yesterday morning, it is better to have expertise of this nature involved in the process. On the issue of coercion and the evidence that we received from psychiatrists—which was more in terms of capacity, but on coercion as well—and certainly from social workers, the Association of Palliative Care Social Workers was very clear that this is what they do. Surely the hon. Gentleman has to agree that by involving those people in the process, we are strengthening the issues he is concerned about.
Danny Kruger
At the risk of debating an amendment that has not even been tabled yet and that will come later in the Bill—I wish we were able to see it—the hon. Lady is absolutely right: I do indeed believe it would be very helpful to have as many professional eyes on each case as possible, so I welcome the suggestion of more experts. I am not clear what they will be yet, and in fact I support amendments that will insist on psychiatric assessments, but those need to come earlier.
It is appropriate and absolutely right—not necessarily for this clause, but for the one we will come to shortly on assessment—that there should be as many professional eyes on the case as possible, but there does need to be a judge at the end of the process. That is certainly what the House of Commons voted for, and I think it is what the public would require. In the absence of that—if there is not going to be a judge applying this somewhat legalistic definition of coercion that apparently should include all the more insidious forms of influence that we are concerned about—in my view it is even more imperative that we specify very early that the first doctor who sees the patient must ensure that there has been no undue influence, manipulation or encouragement.
Kim Leadbeater
I will speak briefly because we have had a thorough discussion about these issues. I completely understand the sincere intention behind these amendments. It is clear from the fulsome discussion we have had that colleagues across the Committee agree that undue influence and manipulation should be covered by the Bill—as should all types of coercive behaviour. The question is, “How?” I feel reassured by comments from legal colleagues and the Minister that the language currently used in the Bill—“coercion” and “pressure”—covers these additional concepts, as those terms appear in existing criminal offences, and the statutory guidance from the Home Office in 2023 along with the Crown Prosecution Service legal guidance cover the broad range of coercive behaviours. It is up to hon. Members to decide whether to push these amendments to a vote. I am understanding of the intention and appreciative of the comprehensive debate that we have had.
Rebecca Paul
I thank all Members for their contributions. I echo the hon. Member for Spen Valley when I say that this is one particular case where we all agree on what should be happening functionally and practically. We have had some quite technical arguments today about the meanings and definitions of certain words and how they would apply. It has been a constructive and interesting debate. As a first-timer to a Bill Committee, it has been a great experience.
It is clear from the evidence received and the contributions from Members that subtle coercion is something we are all concerned about and recognise needs to be dealt with. We have heard powerful stories today and from witnesses in recent weeks, so it is incumbent on us to listen and take action. One of the points that resonated with me yesterday was that made by the hon. Member for Bradford West. I am now paraphrasing a little bit: essentially, she said that we are not legislating for a perfect world where everyone is treated equally; that our society is filled with inequality, and we must legislate for the reality, not for the rose-tinted version that we would all prefer. Coercion and undue influence does happen more commonly than we might think, and it is hard to detect. It is therefore vital that when we go through this Bill, we always have the most vulnerable at front of mind. It is not about when everything works perfectly, as intended, for the very small group of people who would benefit from the Bill, but what happens when it does not work, and the impact on a potentially bigger, more vulnerable group. That is the crux of our roles here today.
I thank the Minister for her very informative and helpful speech setting out the Government’s position on legalities of the various definitions. There will, however, be different legal opinions on this. I sought advice from former Attorney General Victoria Prentis KC, who takes a different view. I am very aware that when it comes to going through the courts, there will be different interpretations and views. I am not a lawyer, so I do not know which is right, but I do know that if I put this amendment on the face of the Bill, it is there and it is safer. That is where I am coming from on this. I reiterate that we do see these terms “coerced”, “pressured” and “unduly influenced” in various bits of legislation. Those words are chosen for specific reasons. It is important to note that.
On encouragement, I am going to talk again about the purpose of the amendment. Right now, under the Suicide Act, assisting someone to commit suicide is a crime, but encouraging someone to commit suicide is also a crime. Clause 24 of the Bill decriminalises the assistance piece to allow legalisation of assisted dying, but it does not decriminalise the encouragement piece. I have tabled amendment 82, because we need to address that. The clause is limited to the provision of assistance and does not include the encouragement of a person to end their own life.
I understand the concerns of my right hon. Friend the Member for North West Hampshire about how “encouragement” could be interpreted, which is a really good point. I also take the point that although it is referred to in the Suicide Act, there is no clear definition, so we are relying on case law. If we all came to this with a blank bit of paper, we might come up with different laws. However, we have laws that are already in place, and that is why I have tabled this amendment. The reality is that encouragement of suicide is a criminal activity right now, which is why we need to address it here.
On undue influence, the Minister set out that the amendment is not legally necessary. The hon. Members for Rother Valley and for Penistone and Stocksbridge gave interpretations of this point, but I gently point out that they contradicted each other, which shows how complicated the situation is. Different people will have different views. The hon. Member for Penistone and Stockbridge said that “undue influence” is a term in equity, and that it is not proper to have it as part of the criminal offence of coercion in clause 26, but the hon. Member for Rother Valley said that coercion in that provision does not include undue influence. Does that not show that the legal meaning of the Bill is unclear and would benefit from some clarification?
Amendment 23 on undue influence first appeared on the amendment paper on 21 January, almost three weeks ago. My understanding from those who were previously in government, including at the Ministry of Justice, is that when an MP tables an amendment that is legally unnecessary, the Government would seek to meet them, together with Government lawyers, to explain why the Government believe the amendment is legally unnecessary and to give them time to reflect. It is my understanding that, with respect to the amendment in the name of my hon. Friend the Member for South Northamptonshire (Sarah Bool), that was not done. She met the Bill’s promoter, the hon. Member for Spen Valley, on Monday, but they did not discuss the amendment on undue influence.
Similarly, my amendment 82 on encouragement appeared on the amendment paper on 4 February, over a week ago, and I have had no communication from either the Government or the Bill’s promoter about it. The first time I or my hon. Friend the Member for South Northamptonshire have heard that our amendments might be legally unnecessary or problematic is today. When formulating my amendment, I had the benefit of advice from former Attorney General Victoria Prentis KC, who has written a letter to The Times endorsing it; the Minister will appreciate that I would not want to withdraw my amendment without the benefit of further advice from her, so I will press it to a vote.
However, if there are any points of technical drafting relating to the amendment that the Government would like to deal with through tidying-up amendments, I would very much welcome that. What has come out of this conversation is that it is not straightforward or clear; there are some things that need to be thought through, including the interactions between clause 24 and clause 26 and the various definitions, so that we are being really clear. I am open to doing that in the most suitable and appropriate way.
Kim Leadbeater
I am not sure whether the hon. Member contacted me to meet—if she did, I am very sorry; I must have missed that message—but other members of the Committee and Members of the House have asked me to meet with them, and I have met with them and had discussions. If she contacted me asking to discuss her amendment, I apologise.
Rebecca Paul
I can confirm that I did not contact the promoter on this. My understanding is that if something is not legally coherent, it would normally be the Government who would contact the relevant MP to have that discussion and allow that reflection. That was the point I was trying to make; my apologies if I focused on the promoter more than I should have. I always enjoy meeting the promoter of this Bill.
Kim Leadbeater
I welcome the broader debate, but I am very conscious that the amendment does not actually use the word “burden”. It talks about someone
“acting for their own sake rather than for the benefit of others.”
Although the broader debate is welcome, it is important to look at the detail of the amendment.
Danny Kruger
That is fair enough. The amendment seeks to insist that people will have an assisted death for their own sake. What we are trying to exclude is the opposite of that—that they are doing it for others. The principal reason why people want an assisted death, if they are not being coerced—which we have already sought to exclude—is that their own internalised view that it would be better for other people for them to do so.
Danny Kruger
I always worry when the doctor is providing assistance. [Laughter.] No, I am grateful to the hon. Gentleman for trying to get me back on track.
We hear about morphine allergy, and I recognise that apparently it does exist, albeit very rarely. Patients with a morphine allergy can still receive opioid analgesics—there are different sorts of opioids—and there are case studies in the literature that show they can achieve good palliation.
Kim Leadbeater
As someone who lives with someone who has a very severe morphine allergy, I can assure the hon. Gentleman that those things do exist and are very real, and they create a huge sense of fear in people. Having met a terminally ill woman who is also allergic to opioids, I think it is really important to acknowledge that these are very real problems for people.
Danny Kruger
I totally acknowledge that. I fully recognise that, as I said, morphine allergy does indeed exist, but I am told that it is very rare. I hope that the hon. Lady’s relative will confirm that there are other things that can be done for people who suffer from pain if morphine is not appropriate.
I suppose that is the point that I want to make: no palliative care professional would ever say that they cannot help somebody in terrible pain. There is always something that they would like to do and always more that they can do to assist. The simple reality is that palliative care is improving so much that there is only an infinitesimally small number of people whom palliative care professionals would confirm they cannot help. I recognise that those people exist. I am not being naive or Panglossian and suggesting that palliative care can be perfect in all cases, but if we are serious about the purpose of the Bill, which is to help those whom palliative care cannot help, I suggest that that number will be very small.
I pay tribute to the hon. Member for York Central (Rachael Maskell) and to the noble Baroness Finlay, whom I mentioned. They are leading a commission on palliative care at the moment, which is a helpful corollary to the debate we are having here. They will make a series of recommendations, which I will not go into.
I want to conclude with this obvious point. I am repeating myself, in a sense, so I will be quick. If we are going to do this, let us be honest and straightforward about what we want to achieve. We want people who are dying in extreme agony at the very end of their life to avoid the pain of death and be able to avail themselves of this service. It is either that or we say, “No, we have no interest in people’s motivation for wanting it. We simply respect their autonomy. Unless we can detect external coercion,” which is the only thing that the Bill currently seeks to exclude, “and as long as a doctor can give confirmation that they have six months to live,” which is not difficult to get, “we don’t care why they’re doing it. We respect their wish, and whoever they are and whatever is going on behind the scenes, they can go for it.” We either have a Bill based on full autonomy—I think that is what some hon. Members genuinely believe we should do—or we try to restrict it to just those people who face an agonising death at the very end.
Stephen Kinnock
I cannot really comment, because I did not get the specific question that my hon. Friend asked.
Kim Leadbeater
Returning to the amendments before us, I will try to keep my comments brief, as we have had a thorough debate this afternoon. On amendments 95 to 104, I have spoken to the right hon. Member for Braintree and I know that these amendments seek to stimulate discussion, and I am very pleased that they have done that this afternoon. I also know that they come from a good place.
I have already discussed the additional safeguards around training that would be added to the Bill through new clause 8, which states that the Secretary of State must consult
“persons appearing to…have expertise in matters relating to whether persons have been coerced”.
That would consolidate the existing measures in the Bill and, I hope, relate to the concerns expressed in the amendment to some degree.
More broadly, the reasons that someone might choose an assisted death may well include sparing those they love the pain of seeing them suffer, as we have heard this afternoon. That is certainly something that members of my family and people I have spoken to say would matter to them. That should not prevent the provision of assistance. It is surely for that person to decide.
During oral evidence, we heard powerful testimony from Liz Reed about her brother Rob, who had an assisted death in Queensland, Australia. Rob was 39 years old and had a young family when he was diagnosed with stage 4 terminal lung cancer. He was fit, young and healthy, and did not smoke. As well as taking back control at the end of his life, one of his main reasons for choosing an assisted death was so that his young family could remember him as the man and the dad he was. He was not afraid of death, but he was afraid of dying in an undignified and painful way; he was afraid of not getting to say goodbye to his wife and children, or them having to find him after his having had a massive heart attack. Surely we should not decide that that is not acceptable and understandable. It is a perfectly understandable reason for choosing an assisted death.
Liz told us that Rob
“was able to change his mind, which he did, in terms of dates and when it would happen. His views and the views of his family were also taken into account and, through the process, he was treated like a person with autonomy whose choices were being respected.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 254, Q328.]
If relatives were implicitly or explicitly coercing or pressuring someone, that would of course be very different—and that is covered by the Bill—but to prevent someone from wanting to consider their loved ones in their final weeks and months of life does not seem at all reasonable to me.
I have talked about training, which is important and feeds into the debate about the assessment of coercion and pressure—here, I refer again to my new clause 8. As we heard during the oral evidence, who is involved in that training is important. We heard from the Association of Palliative Care Social Workers. Its position statement on assisted dying states:
“As social workers we bring a distinctive perspective and skill set. Our focus is on helping people to get practical needs met; to enable them and their families cope with the impact of serious illness and dying and to plan ahead”.
Kim Leadbeater
This point is about training, and so about hearing from the right people when it comes to the training of professionals. It is important that we ensure that the Secretary of State must consult such people, and I anticipate that organisations such as the Association of Palliative Care Social Workers would be consulted. The statement continues:
“as well as protecting people from abuse, neglect and coercion at a time…when they are most vulnerable…Our expertise includes building trusting relationships, comprehensive knowledge of safeguarding”.
By looking at the training process, people’s motivations for seeking an assisted death would hopefully be considered.
Danny Kruger
Would the hon. Lady be content if somebody who had capacity chose an assisted death for the purpose of saving their family money?
Kim Leadbeater
Very few cases are as straightforward as that, and that is where conversations with doctors and professionals are really important. I think it was the doctor from California who said that if someone said to him, “I am doing this because I am a burden,” that would be a red flag. There would have to be a much more detailed, complex conversation with patients about what their motivations were, and it is important that we acknowledge, as medical colleagues have, what those conversations might look like.
Danny Kruger
But if the doctor concluded that they were doing it because they felt they were a burden, they would still be able to get the assisted death under the hon. Lady’s Bill. The only question is whether they have capacity. If they have been judged to have capacity, choosing to have the assisted death in order to save their family money would be acceptable under her Bill, would it not?
Kim Leadbeater
We are oversimplifying a complex situation and a difficult conversation. We have talked about coercion and pressure a lot. If someone says, “I just want it all to be over, because I feel like a burden”, that is the sort of conversation that doctors acknowledge would be a red flag. Those are complex, difficult conversations; we need the expertise that we would get by providing serious amounts of training around this issue so that those conversations can take place in a sensitive way.
Danny Kruger
This is my last intervention, I promise. I want to hear the hon. Lady confirm that under the Bill as currently drafted, after all these conversations have taken place, as long as the doctor cannot find evidence of coercion, they would be obliged to approve the assisted death, as would the judge and the judicial panel. If that is the case, and they conclude that a person has capacity and there is no evidence of coercion, no matter what conversations go on—if the person wants to do it in order to save their family money—the doctors and the judges would have to say yes.
Kim Leadbeater
I, again, refer the hon. Gentleman to my previous points; we are oversimplifying a really complex conversation, which would take into account lots of different factors for each individual. That is all I will say on that point.
Rebecca Paul
It is really important that we are honest about what the Bill does. We are looking for a simple answer—yes or no. My hon. Friend the Member for East Wiltshire has very clearly set out the situation, and I know that the hon. Member for Spen Valley understands her Bill inside and out, so if she could give us a yes or no that would be really helpful.
Rebecca Paul
It is the same question asked by my hon. Friend the Member for East Wiltshire: would someone be allowed to access assisted dying if it was clear that they had capacity and their reason for it was simply not to cost their relatives financial expense or be a burden. It is important to be honest about what the Bill does. Is the answer to that yes?
Kim Leadbeater
I am certainly not being dishonest, which is the hon. Lady’s implication. I refer back to the complexity of those conversations, and the fact that safeguards will need to be in place to check for coercion, dishonesty and pressure. Ultimately, it comes down to a question of autonomy, dignity and choice for patients, but they are not simple conversations. I think it would be very unusual if the conversation looked how she is describing.
Kim Leadbeater
It is really important to remember that, at the moment, there is no legal framework that checks terminally ill people’s reasons for ending their lives or shortening their deaths. That is why having this legal framework is so important. During the oral evidence sessions, Sir Max Hill told us that in his experience of working as Director of Public Prosecutions, he oversaw a number of cases to do with people travelling to Dignitas. He said:
“In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill…is that that will be reversed, and scrutiny will be before death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 86, Q111.]
The same applies to terminally ill people who have taken their own lives in this country. The only time that anyone checks for coercion, either internal or external, is when the person is dead. The Bill provides a robust legal framework, which is a significant improvement on things as they stand.
Dr Aneez Esmail, who changed his position on assisted dying as a result of his work as a professor of general practice, said in his oral evidence,
“How is the law protecting anyone at the moment?…we don’t have a legal framework…it is actually very unsafe…a law…which produces safeguards, is a huge improvement on where we are at the moment.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 166, Q211.]
I also worry about the subjectivity of this amendment. We know that the law likes certainty, rather than abstract concepts, such as doing something for one’s “own sake”, which seems somewhat abstract.
Naz Shah
My hon. Friend has referred a few times now to us not having this framework. We do not have this framework because we do not have this law. Maybe she can help me to understand or correct me if I am wrong, but this framework does not exist because we do not have this law. For this law to exist, we have to have the framework. I am inferring from her a suggestion that she is somehow intervening for people who might be being coerced in a hospital setting or at the end of life in any case, but that is not the case.
Kim Leadbeater
I am not quite sure I understand the point. My point is that there is no law that is checking people’s motivations for ending their lives when they are terminally ill, and that is what this law would do.
I will make some progress, and come to amendments 235 to 245. As we have heard from witnesses, choice at the end of life is not just about physical pain, be it current or potential. It can also be about psychological suffering and mental torment as a result of being terminally ill —and it is of course about taking back control, bodily autonomy, dignity and choice. What about patients who are in severe mental torment and fear as a result of their condition, and terminally ill people who want the autonomy and dignity of taking back control at the end of their lives? Who are we to ask them to prove their level of physical pain or desire to avoid physical pain, and to deny them the choice in their final few weeks or months?
Terminally Ill Adults (End of Life) Bill (Tenth sitting)
Kim Leadbeater ExcerptsWednesday 12th February 2025
(1 year, 6 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 February 2025 - (12 Feb 2025)
Rebecca Paul
That is an important point. Obviously, case law becomes quite important in this. Supporting someone’s decision is very different from encouraging someone who was not in the place of wanting to go through with assisted dying. Again, these things do sometimes end up in the courts, because sometimes it can be a grey line. It is important that we have this protection. Right now, it is an offence to encourage someone to commit suicide, and we need to recognise that. That is the law right now.
Kim Leadbeater (Spen Valley) (Lab)
The hon. Lady makes an important point. The idea is that the Bill makes an exception to the Suicide Act. I fully support her point about the supportive nature of the conversations that would take place with families. If we use the word “encourage”, we are in danger of lacking clarity. Where is the line between encouragement and support? I would like her to expand on that, if she could.
Rebecca Paul
I completely agree. It is important to recognise that different people will have different views on levels of coercion. I have already quoted some of the witnesses; I found it quite jarring that certain witnesses who had facilitated assisted dying for hundreds—perhaps thousands—of people said that there were no cases of coercion. I find that difficult to believe, although I do not doubt for a second that they believe it.
Kim Leadbeater
The witnesses gave evidence in good faith, and I would be uncomfortable if we started to question the validity or truth behind their testimony.
Rebecca Paul
Just to clarify, I am not questioning that they were not telling their truth. I completely believe that, from their perspective, they honestly believe they have never seen a case of coercion. Maybe I am more of a glass-half-empty kind of girl than some other people, but I question whether that is really the case. In my 45 years on this planet, I have learned enough about humankind to know that these things do happen, but different people will take different views when it comes to detecting them.
Rebecca Paul
Clause 24 decriminalises assistance to commit suicide, in order that assisted dying becomes lawful. It does not specifically decriminalise encouragement, which means that the Suicide Act 1961 still applies if someone were to encourage someone to commit suicide. It would therefore be a crime and have a sentence associated with it. However, the hon. Lady makes a really good point: it would be of great value at the relevant time to hear from the Minister on the legal point I am making. I hope everything I am saying is coherent and sound, but it would be useful to hear from the Minister.
Kim Leadbeater
The hon. Lady is doing an amazing job—and taking lots of interventions. As I have always said, I am very open-minded to whatever we need to do to make the Bill more robust. I am not a lawyer, like the hon. Lady—we have lawyers in the room, fortunately, who can provide guidance and assistance in that regard—but what has been made clear to me is that the law needs clarity.
The hon. Lady has already mentioned a couple of times that this change could be described as a lower level of coercion, or it could be argued that there is a lack of clarity there. I think the sentiment is absolutely right, and I really support that, but we need the law to be clear. And if legal colleagues are assuring us that the concept of undue influence would be covered under “coercion”—and I am kind of hearing that—then I think it would be covered. I think that point about the law being clear is really important. Does the hon. Lady agree with that?
Rebecca Paul
I completely agree. If we do not incorporate undue influence, we are at a lower threshold compared with withdrawal of life-sustaining treatment. That does not feel to me like the right position, but equally, this is a novel bit of legislation and we need to increase the safeguards further. Obviously, we shall be debating numerous amendments whose purpose is to raise that threshold. It is always very hard—how long is a piece of string?—to know exactly where to set a threshold. Different people have different views. My personal view is that in this Bill the threshold is too low, so we need to raise it by agreeing some of these amendments. So far, none of the amendments that have been suggested has been accepted. I really hope that during this Committee stage we will increase the safeguards.
Kim Leadbeater
Hopefully this will be my final point on this subject. I believe there is consensus in the room; no one is saying that undue influence is acceptable. The question is, where does it sit within the Bill in terms of definitions? That is where I would appreciate, along with the hon. Lady, advice from legal experts—and indeed the Minister—around whether we are confident that with the concept of coercion we are including undue influence. Does she agree that that clarity would be helpful?
Rebecca Paul
I absolutely agree that such clarity would be very useful. The hon. Member and I both want to ensure that undue influence is captured somewhere; I am less picky about where. As long as it gets covered somewhere in the Bill, that would be an improvement to the Bill, and I hope that everyone would really welcome that. I think everyone recognises the issue. I am not hearing that people are opposed to this; they recognise that there can be more subtle forms of coercion. If we can work together to find the best place for that to go in the Bill, I am very open to that.
Rebecca Paul
My hon. Friend’s point goes to the heart of the case, and to the point that I made earlier: it is extremely difficult when the Bill is a moving feast. We are tabling amendments to the Bill as drafted, but if substantial changes are made, that will impact some of what we did earlier.
Kim Leadbeater
We are looking at different amendments as the Bill progresses, but a judge would always be involved in criminal offences, which is what we are talking about now.
Kim Leadbeater
My hon. Friend is making some powerful and important points about, sadly, a lot of the ills in society, which we all deal with.
Let us take the example of a woman who has a terminal illness and is coerced and pressured by a loved one to end her own life. At the moment, we have no idea whether that has happened, because there is no legal framework around that dreadful situation. The Bill would create a legal framework, so that conversations would be had with that woman prior to that point and, hopefully, that point would never come. She would speak to two doctors, potentially a psychiatrist, and other experts to ensure that that did not happen. At the moment, there is no legal framework around that. The Bill also includes a criminal offence of coercion, for which someone could go to prison for 14 years. At the moment, that just is not there.
Naz Shah
I thank my hon. Friend, but I feel that the point is being missed. It is true that there is no framework, but for somebody to get to this point in the first instance they need to have a terminal illness. There is a framework around domestic violence, and domestic violence laws exist for everybody. Frameworks already exist for women fleeing domestic violence, and there is no shortage of attempts to try to get those legal frameworks right across society. That is why we had the Domestic Abuse Act 2021, why we have committed to halving violence against women and girls, and why the Prime Minister made a personal commitment in that regard—and rightly so.
There has already been a test case in which a judge said that medics have an obligation in this context. An hon. Member referred yesterday to assisted dying being a treatment, although I disagree, and we had that conversation later.
Juliet Campbell
To reply to my hon. Friend the Member for Stroud, I understand that the writers, promoter and sponsors of the Bill want it to be as simple as possible. The thought is that if we make it as simple as possible, there is less room for confusion and misinterpretation, but there are times when we can make things so simple that we allow far too much interpretation. Words such as those that the hon. Member for Reigate wants to be put into the Bill are really important. Manipulation is really important. Coercion and pressure are not measures of every type of controlling behaviour that happens to individuals.
Kim Leadbeater
I am very supportive of the sentiment behind my hon. Friend’s amendments, and she is making some really good points. Again, the question is about the simplicity of the language that goes in the Bill. The CPS guidelines on coercion and coercive control includes behaviour that is
“highly manipulative such as: ‘love bombing’ where the suspect will intermittently do what appears to be loving acts, seeking to present these as interrupting or negating the course of conduct”,
so there is language in there about manipulation. I hope that provides some reassurance that manipulation is seen to be part of the broader concepts of coercion and coercive control in the eyes of the law.
Juliet Campbell
I thank my hon. Friend for looking that up so swiftly. I still think that those additional words need to be included in the Bill. “Coercion” and “pressure” are used as a catch-all for manipulation, but the Bill does not allow people who are using it in their everyday life—doctors, clinicians, nurses and social workers—to understand that.
Danny Kruger
The hon. Member is absolutely right—undue influence does exist in law, including in laws that have been passed very recently. I recognise that the hon. Member for Rother Valley is not impressed by laws that are more than 10 years old, but I hope he might be satisfied that a law passed last year is sufficiently up to date and modern for him to regard as morally valid. Undue influence is an existing term, and we should apply it in this case.
Kim Leadbeater
On that point, and in response to the comment made by my hon. Friend the Member for Bradford West, although I stand to be corrected by my hon. Friend the Member for Rother Valley, I do not think that he said that undue influence was an archaic term. I think it was the word “encouraged”.
Danny Kruger
My goodness, 2009 might be in the mists of history for the hon. Member for Rother Valley, but it was the last Labour Government. That is very good to know, and I am grateful to my hon. Friend.
The hon. Member for Spen Valley made the point, which is quite often made in defence of the Bill, that there is currently no framework to spot coercion, therefore the Bill creates greater protections for people. The fact is that, as the hon. Member for Bradford West said, there is no law that currently allows assisted dying, so no framework is necessary to prohibit encouragement or inducement to an assisted death—the opportunity does not exist. I think everyone must acknowledge that, if we pass the Bill, we may open up a new avenue for abuse, and it is necessary that the Bill close it off. That is right and appropriate.
Coercion and abuse no doubt go on and are tragically common, but the answer to that problem is not to legalise assisted suicide and put a regulatory framework around it with limited protections against coercion and influence. We have to deal with the terrible cancer of abuse and coercion that exists in our society, as the hon. Member for Bradford West said. If we are concerned about undue pressure in families, that should be our social mission. If we are to have an assisted dying law, let us make it as strong as possible. As I say, we are potentially opening up a new avenue for abuse within families.
Kim Leadbeater
For me, the law needs to change for a number of reasons, and we will talk about some of them as Committee proceedings continue: autonomy, dignity, personal choice and bodily autonomy. In terms of this issue, we heard from families who faced police investigations as a result of a loved one taking their own life. Not only were they dealing with the trauma, grief and loss of their bereavement, but they faced often months and months of police investigation. In the oral evidence sessions, we heard from Pat Malone, who was in that situation after his brother took his own life. Surely the hon. Member has to acknowledge that that is a problem. It is not the only problem, and it is not the only reason for the Bill, but he has to acknowledge that we as legislators have a duty to correct it.
Danny Kruger
I am sure that the hon. Lady will acknowledge that those investigations will still happen, because not everybody who commits suicide will be subject to the Bill; not everybody who is terminally ill and wants to take their life with the assistance of their loved ones will be caught under it. I am sure she acknowledges that it is therefore still appropriate to have safeguards against assisted suicide outside the law—in fact, the Bill strengthens those safeguards. Those will still continue. I also regard it as appropriate and necessary to have a law against assisted suicide, for all the reasons that we have been discussing.
The hon. Lady is right that it is appropriate for Parliament or the authorities in general to ensure that cases such as those we have discussed, and that have been powerfully testified to us, are handled sensitively. In an overwhelming number of cases, the police do handle them well and sensitively. It might be that we need to improve the guidance around prosecution, and that is an important question. I certainly do not want the families of people who have taken their own lives to be harassed and chased through the courts, and I think we would all agree on that. In that respect, the guidance for the CPS and the police will always evolve.
Danny Kruger
I think that is right. I do not accept the claim that this Bill is somehow a response to the problem of abuse, coercion or the pressure to end life in families. Tragically, in jurisdictions that have an assisted dying law, the number of unassisted suicides—suicides that happen outside of the law—go up, because no law can catch all the people who might want to take their own lives. Thankfully, there is no blanket support for any assisted suicide; all the jurisdictions have some restrictions.
More significantly, if the state said that some people’s lives are not worth living and that it is an acceptable choice for them to end their own life—which is not what the current law says; we have legalised suicide, not actually endorsed it—by passing a law that endorsed the choice of some people to take their own life, we would be sending a signal that we agree that some people’s lives are not worth living. The social consequence of that is clear in the evidence from other jurisdictions: suicide in the general population goes up as a result of an assisted dying law.
Kim Leadbeater
On that point, the evidence does not clearly show that there is a direct relationship between those two things; there are other factors and no way of knowing that. On the concept of ending one’s own life and giving people the choice under the provisions of the Bill, what would the hon. Gentleman say to people who frame that concept very differently—as a way to shorten their death? Those terminally ill people, in my experience—I have met many of them now—do not view this as a way of ending their life, because they want to live, but the reality is that they are dying and want to take control of what their death looks like. How would he respond to that?
Terminally Ill Adults (End of Life) Bill (Ninth sitting)
Kim Leadbeater Excerpts(1 year, 6 months ago)
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Danny Kruger
We are trying to avoid suffering, pain and bad deaths. We all share that view. Indeed, later amendments look explicitly at the purpose of an assisted death and the question of the avoidance of pain. I am simply making the important distinction between the decision to withdraw treatment and the decision to administer fatal drugs, which, as I say, are qualitatively different—different in principle and different in practice.
Kim Leadbeater (Spen Valley) (Lab)
To build on the point made by the right hon. Member for North West Hampshire, this is the heart of the issue. You are right that they are slightly different things.
Kim Leadbeater
Sorry, Sir Roger. The hon. Member is correct. It gets to the heart of whether we think this is the right thing to do. The Bill Committee’s job is to put that decision back to the House. It is not for us to decide today; it is for us to have the discussion about how we can improve the Bill and send it back to the House.
The hon. Member is absolutely right to say that it gets to the heart of the issue. I think dying people should be given that choice. In the same way that they are given the choice to have treatment withdrawn or the machine turned off, they should be given the choice to take control and to have the autonomy and dignity that assisted death will provide.
Danny Kruger
The hon. Lady has expressed very well her whole purpose for the Bill. In a sense, all the debates we are having about safeguards, protections, process and eligibility are secondary to her purpose, which is to give autonomy to patients. One has to ask about the purpose of the safeguards, particularly the one on people having to administer the drugs themselves. In all jurisdictions where physician-assisted suicide is legal, that is the option that people overwhelmingly opt for—I certainly would if I were in that situation.
The hon. Lady is right, and that is what she is trying to do: she simply wants the Bill to go through. I take strong issue with her implied point that our purpose here is simply to work out the Bill’s implementation. We are looking at each clause, line by line, to decide whether it is safe or not. As she said herself at the time, the decision on Second Reading was a vote in principle to continue the discussion, which is what we are doing now. We are closely and minutely examining whether every clause is safe.
Kim Leadbeater
On that point, it is not an either/or. It is not just about passing legislation that improves choice and gives autonomy and dignity to dying people, and indeed fixes the current failings of the law as it stands, as we have discussed in great detail. It is about providing safeguards that make sure that is done safely, securely and robustly, and that address the issues and concerns we are discussing. It is not an either/or and it is important to make that distinction.
Naz Shah
I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.
Kim Leadbeater
In respect of those numbers, it is important to be really clear that the vast majority of those circumstances were in the Netherlands and in other jurisdictions that have a much broader set of eligibility criteria than the Bill. We are talking about a very small number of cases in jurisdictions with a similar set of criteria to ours. It is important to make that point.
Kim Leadbeater
I do not think that the hon. Member for Solihull West and Shirley is saying that this is about people with eating disorders or anorexia; he is asking about people who are terminally ill who stop eating and drinking. They do that as a course of action to essentially end their own lives. It does happen on a fairly regular basis. We have had testimonies from families who have watched loved ones essentially starve themselves to death. It is different from having an eating disorder or being anorexic.
Stephen Kinnock
The hon. Member makes an interesting point. I simply reiterate that this is a very dynamic Bill Committee; I believe that 362 amendments have been tabled. Given the Government’s focus on establishing the Bill’s implementability, the coherence of the statute, the legal dimensions and the complexity of what we are dealing with, we took the position that it was better to wait for the Bill to clear Committee stage before producing an impact assessment. To do otherwise could have involved a large amount of second-guessing based on radical changes that might well have come out of the Bill Committee. I reiterate the logic of that sequencing.
On the point about the established legal framework, which clinicians have been applying since 2007, “capacity” would still be used for other decisions about care and treatment.
I turn to amendment 202, tabled by my hon. Friend the Member for Spen Valley on the advice of the Government. It ensures that the assessment of “capacity” is utilised by the assessing doctor, and corrects a typographical error in clause 9 to ensure that an assessment of capacity will apply consistently throughout the Bill. As I said earlier, how and whether the law on assisted dying should change is a matter for this Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee when considering potential changes put forward.
Kim Leadbeater
I will try to keep my comments brief. It is excellent that we have had such a thorough debate on this particular issue, but I am also very conscious of time.
I will do the quick and easy bit first. As the Minister has just said, amendment 202 is to correct a typographical error in the initial drafting of the Bill—despite the high level of expertise involved in the initial drafting of the Bill, that one managed to sneak through. The amendment would simply change the word “capability” to “capacity”, to be consistent with the rest of the Bill.
I now come to amendments 34 to 47 and new clause 1. As we have discussed, those would replace the concept of “capacity”, which is based on the Mental Capacity Act, with a new concept of “ability”. I think that suggestion is coming from a good place and is made with good intention by the hon. Member for Richmond Park; I thank her for her positive engagement with the Bill. However, based on the oral evidence that we received, particularly from the chief medical officer and many other experts, the suggestion would seem unnecessary given that we already have—as has been discussed at length this afternoon—a very well established piece of legislation that is effective in this regard.
The primary purpose of the Mental Capacity Act is to promote and safeguard decision making within a legal framework. As the CMO and other colleagues have said, issues around mental capacity
“are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 31, Q3.]
That view was supported by Yogi Amin, an expert in Court of Protection work, human rights and civil liberties, who told us during the oral evidence sessions:
“It is well understood how capacity assessments are done, and it is ingrained”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]
Sean Woodcock
We all understand the evidence of the chief medical officer and why he and others, including Members here, prefer the use of the Mental Capacity Act. It is understood by doctors and it is used every day.
What this debate is fundamentally about is that assisted dying is not done every day. It is not something doctors are used to. As somebody who has said that she wants the toughest safeguards, it is incumbent on my hon. Friend the Member for Spen Valley to understand that what those of us who have concerns about the Bill are saying is that this is unusual. It is a step into the dark.
The amendment tabled by the hon. Member for Richmond Park is about making sure that the issue is not just about what doctors are used to, but that there is another safeguard to ensure that people are not being exploited. Does my hon. Friend understand that?
Kim Leadbeater
I do. I take my hon. Friend’s comments on board and I will come to address them. As other colleagues have established, it would seem nonsensical to try to introduce a brand new legislative framework rather than use an existing piece of legislation that has stood the test of time. Indeed, Professor Laura Hoyano, emeritus professor of law at the University of Oxford, who has worked in civil liberties, human rights and domestic abuse, said:
“It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts.”
She talked about the withdrawal of medical treatment, as others have this afternoon, and went on:
“It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so...Doctors have to make those assessments all the time.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 227, Q289.]
In the light of that evidence, it would seem unnecessary to create a whole new legal framework around the new concept of ability.
However, although I think the Mental Capacity Act is the correct legal framework to use, I strongly agree with palliative care doctor Rachel Clarke when it comes to additional training on assessing capacity for the purposes of this Bill, which relates to the point made by my hon. Friend the Member for Banbury. She strongly encouraged us to give serious consideration to this matter, saying:
“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training from day one of medical school onwards.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
The CMO also suggested that training on capacity, as has been discussed, may require some slight adjustment. He said:
“There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have...That training should be generic, but may need some adaption.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30-31, Q3.]
I agree. As I have said, I think one of the best things about the Bill is the opportunity it gives us to develop gold-standard training around end-of-life care, end-of-life conversations and choice for terminally ill people. That should include training in assessing capacity specifically for the purposes of the Bill, for a decision that is clearly of such a high level of consequence and seriousness.
Daniel Francis
I absolutely accept what my hon. Friend says about training. I know we have separately discussed places in the Bill where we could replace the word “may” for “must” to make the safeguards stronger. However, I come back to the same points as I made to the Minister. The Mental Capacity Act code of practice, which I presume is what we will be relying on, says:
“If it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.
However, it does not say “must”, and for adults with learning disabilities particularly, that remains a principal concern. Chapter 2 of the code of practice says:
“It is important to do everything practical...to help a person make a decision for themselves before concluding that they lack capacity to do so.”
I know this is not my hon. Friend’s intention, but that is the wording that would lead a doctor to have to help somebody make this decision. My question is: how will we overcome that issue?
Kim Leadbeater
That is a point worth making, and something we will look at through the amendments that my hon. Friend has proposed. I am very happy to look at those, as I have already said, but the idea of creating a whole new concept of ability seems wholly unnecessary in the context of a piece of legislation that has stood the test of time for over 20 years.
I come back to training. Although the full details of the training programme that would accompany the Bill cannot be put on the face of the Bill, I have discussed the issue at length with officials in the Department of Health and I have included amendments to that effect. Amendments 186 and 198 specifically state that training must include assessing capacity and assessing whether a person has been coerced or pressured by any other person. Further comprehensive training will be included in regulations set out by the Secretary of State, and the chief medical officer is confident that that is the correct way to proceed.
Furthermore, as has been referred to, there are multiple opportunities within the process to assess capacity by a range of professionals. I have also tabled new clause 8, which would create a duty for the Secretary of State to consult before making regulations relating to training. Within that, there would be a duty to consult not only the Equality and Human Rights Commission, which is important, but persons with expertise in matters relating to whether persons have capacity and whether persons have been coerced.
Naz Shah
To go back to the point about multiple opportunities and capacity, my understanding from this morning’s Guardian is that an amendment has been tabled—it was mentioned earlier; I do not know whether others have had sight of it, but I certainly have not—on potentially having a panel instead of a judge. My hon. Friend the Member for Bexleyheath and Crayford has just asked a question, and my hon. Friend the Member for Spen Valley responded by saying that she would come back to it, but my concern is that we are looking at the clause now, and once we have discussed it there will be no going back to it. I am trying to understand at what stage in the process she will come back and fix it. If we are going to address it under clause 9, clause 8 or wherever, how will that impact on clause 1? How will it address the issues that we are debating right now?
Kim Leadbeater
At the moment, we are addressing the fitness for purpose of the Mental Capacity Act, but there are other amendments that will take on board some of my hon. Friend’s points, particularly about people with learning disabilities. I am very happy to look at that. I am working to table an amendment before the recess, to give the Committee an opportunity to look at it in great detail. My hon. Friend the Member for Bradford West is right that that would provide another opportunity for assessment of capacity with the involvement of psychiatrists and social workers, who have said that that is their expertise and what they excel in, and who feel that they have a valuable role to play in the process.
Naz Shah
At what stage will we know how the amendments that my hon. Friend proposes have an impact on clause 1? If we make amendments later in the Bill, how will that have an impact on the amendments that we have discussed this morning, in particular in relation to capacity?
Kim Leadbeater
Clause 1 is very specifically about the Mental Capacity Act, on which we should get a chance to vote this afternoon. Other amendments can be tabled ahead of Report, but the fitness for purpose of the Mental Capacity Act is a concept on which we will get a chance to vote this afternoon. Other things can be added to the Bill that would enhance other aspects, but the point that we have discussed this afternoon is about the fitness for purpose of the Act. There are different views on the Committee, which is understandable. I believe that using the well-established legal framework of the Mental Capacity Act, introducing gold-standard training and consulting experts in assessing capacity will mean that there is no need to develop a whole new framework around the concept of ability, particularly on the points made by my hon. Friend the Member for Penistone and Stocksbridge. I therefore do not support the amendments.
Sarah Olney
The hon. Member for Solihull West and Shirley used an arresting phrase this morning: he said that to abandon the Mental Capacity Act would take us “into tiger country”. The concept appeals greatly to me, but what I would say to him and other Committee members is that it is the Bill itself that takes us into tiger country. It is unprecedented, and this is very new territory for legislation in this country. That is the tiger country, right there. If we are going to let those tigers out into the wild, we need to ensure that the British public, and particularly the most vulnerable members of it, have the right protections. That is what the amendment seeks.
There was not a consensus among those who gave oral or written evidence that the Mental Capacity Act is a sufficient safeguard for the purpose proposed in the Bill. I am grateful to the hon. Member for Bexleyheath and Crayford for his speech this morning, which illustrated vividly for all of us how the Mental Capacity Act is used in practice. I particularly thank him for his personal reflection.
Let me reiterate what the amendment seeks. The Bill proposes to judge mental capacity for a decision to request assisted dying in relation to the Mental Capacity Act 2005. There are elements of the Mental Capacity Act that are tried and tested, and should be retained in assessments of capacity in relation to this legislation, but as per the written evidence of the Royal College of Psychiatrists, the Mental Capacity Act is not sufficient for the purposes of assisted dying, because it cannot distinguish between those who suffer from a mental disorder and those who do not. It needs to be adapted for the purposes of the Bill.
My amendment 34 would therefore substitute “capacity” with “ability” and reserve to the Secretary of State the power to define ability for the purposes of the Bill. To me, that is a pragmatic response. The debate in the Committee Room today reflects the lack of consensus among the experts who gave witness. That is why I think the matter is better resolved by those experts giving advice to the Secretary of the State, so the definition of ability can be expertly decided on.
The difference between choosing assisting dying and choosing to end treatment was a big topic of debate both this morning and this afternoon. It goes to the heart of the different approaches that people take towards the Bill. I support the observation from the hon. Member for East Wiltshire that the difference is between dying of an illness itself, or dying of the effects of the approved substance, as laid out in the Bill. To me, that is a substantial and material difference, so our approach to establishing capacity should reflect that.
The hon. Member for Reigate made an important point about the difference between a passive and an active choice. That very much reflects what I am trying to achieve through the amendment, which would allow us to strengthen the safeguards around the assessment of capacity. Given that there was not a consensus, among the experts who gave evidence, on whether the Mental Capacity Act is sufficient for the purpose, the pragmatic step is to allow the amendment to create the conditions under which a stronger safeguard can be adopted if necessary.
Question put, That the amendment be made.
Kim Leadbeater
On a point of order, Sir Roger. I am not sure that we have voted on amendment 202.
The Chair
We will take it when we get to it. Thank you for raising that point, because this is a learning process for a lot of people. We decide on the amendment that is moved; we will then decide on any further amendments, if any Member wishes to propose them, in the order in which they appear in the Bill. In this case, that is not yet.
Kim Leadbeater
Did the polling ask people’s view on whether terminally ill homeless people should have access to assisted dying, or on whether it should be offered to homeless people just for being homeless? That would seem very strange.
Danny Kruger
The hon. Lady might well be right. I totally take that point. I dare say it is people who are homeless. I think the question put was, “Should those who are homeless simply be able to ask for assisted dying?” People in this country say no. In Canada, asked the same question, a quarter of people say yes. The effect of the law has been to institute this principle of assisted dying being an acceptable choice under any circumstances, which is indeed, I am afraid, what happens.
I will end with a powerful quote from Fazilet Hadi, who spoke to us representing disabled people. She said:
“This Bill is not an abstract exercise; it will land in a society that is rife with inequality.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 185, Q242.]
She said that the society the Bill will land in is the thing that needs to change, not the Bill. She thinks we need to change our society before we do anything like introducing assisted dying. I agree.
Kim Leadbeater
My hon. Friend has listed certain categories of people, and we will come on to the definition of terminal illness. I am confident that, given the definition of terminal illness in the Bill, some of the groups of people she has talked about will not be included in its scope.
Naz Shah
Where does it specify that? I know we are going to debate that subject later, but right now there is nothing that gives me assurance that those people will be excluded. Unless there is an amendment that my hon. Friend the Member for Spen Valley will support, the Bill, as drafted, would still apply to somebody if they decided not to carry on with treatment, or if they decided they did not want to take their insulin or other medication and that would lead to their death. I am happy to give way to my hon. Friend so that she can explain how she is going to deal with that.
Kim Leadbeater
I will. Let me read from the Bill. The definition of “terminal illness” under the Bill is that
“the person has an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.
The conditions that my hon. Friend is describing can be reversed by treatment and are not inevitably progressive. We will come to that debate in due course, but that definition is crucial.
Naz Shah
I beg to differ on the wording that my hon. Friend just used. It actually makes my point. As it stands, if I were an insulin-dependent diabetic—and I have been so on three occasions, with my children— I could say that if I stopped taking that insulin, I would become terminally ill. In the Bill as it stands, and as it is drafted, I would meet the criteria.
Kim Leadbeater
My hon. Friend would not meet the criteria. She might be describing a condition that cannot be reversed, but it is the “inevitably progressive” part that we are talking about. Because it can be treated, it is not an
“inevitably progressive illness, disease or medical condition”.
The Chair
Order. A debate about the definition of “terminal illness” will come later in the Bill, and it might help us all if we were to swiftly move forward to that point.
Danny Kruger
I am grateful to my right hon. Friend. I particularly applaud his amendment’s aspiration to ensure that the doctors’ conversations are properly recorded.
Kim Leadbeater
Further to the comment from the right hon. Member for North West Hampshire, all of that will obviously be recorded on the patient’s medical records as well. The idea that it is not being recorded is just not correct.
Danny Kruger
The decisions will be recorded, but the conversations that the hon. Lady stipulates should take place under the Bill need further recording, in my view, with further evidence of what was discussed in order to ensure that the safeguards have been properly applied. I also point out that for the chief medical officer to effectively carry out the review under clause 34, they must have evidence available, not just a few schedules that have been signed off.
Likewise, I am glad to say that the opportunity remains for a legal appeal, in so far as we still have a judicial process, but I am concerned that the lack of any documentary evidence makes the application difficult for any external party or the Court of Appeal to review. Currently, there is a great paucity of information that the High Court judge considering the application can request. I think it is important that the High Court judge—or, indeed, the panel, if we move to that approach—should have access to a much fuller range of documentation to ensure that the process has been properly followed.
Terminally Ill Adults (End of Life) Bill (Eighth sitting)
Kim Leadbeater ExcerptsTuesday 11th February 2025
(1 year, 6 months ago)
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Kim Leadbeater (Spen Valley) (Lab)
Further to those points of order, Ms McVey. I take on board people’s comments. There’s no two ways about it; this is a considerable amount of work for members of the Bill Committee to undertake. As has been alluded to, there are a wide range of amendments being proposed. The job of the Committee is to take evidence, look at those amendments, discuss and debate them, and then vote accordingly. That is the process that we are all here to undertake.
Kim Leadbeater
I beg to move amendment 178, in clause 1, page 1, line 3, after “person” insert “in England or Wales”.
This amendment provides that only persons in England or Wales may be provided with assistance in accordance with the Bill.
The Chair
With this it will be convenient to discuss the following:
Amendment 179, in clause 1, page 1, line 13, after “provided” insert “in England or Wales”.
This amendment limits the assistance that may be provided in accordance with the Bill to assistance in England or Wales.
Amendment 180, in clause 1, page 1, line 20, at end insert—
“(3) The steps to be taken under sections 5, 7, 8 and 13 must be taken—
(a) when the terminally ill person is in England or Wales, and
(b) in the case of the steps under sections 7 and 8, by persons in England or Wales.”
This amendment provides that steps under clauses 5, 7, 8 and 13 must be taken by and in respect of persons in England or Wales.
Amendment 182, in clause 4, page 2, line 21, after “person” insert “in England or Wales”.
This amendment limits subsection (3) to cases where the person is in England or Wales.
Amendment 193, in clause 7, page 4, line 8, at end insert—
“(ca) is in England and Wales,”.
This amendment, which is consequential on Amendment 178, provides that the coordinating doctor must ascertain whether, in their opinion, the person who made the first declaration is in England and Wales.
Kim Leadbeater
It is a great pleasure to serve under your chairship, Ms McVey, in this very important stage in the consideration and detailed scrutiny of the Bill.
We are discussing assisted dying for terminally ill adults who have a clear, settled and informed wish to end their own life, and who have not been subjected to coercion or pressure from anybody else to do so. These are very serious matters and deserve serious consideration, which is why I was determined that this Bill should have an unprecedented level of scrutiny. We have heard from a range of over 50 witnesses with differing views on the Bill and have received written evidence from many, many more.
I am grateful to everyone who has contributed in such a thoughtful and constructive way. It has been widely remarked—and I wholeheartedly agree—that the Second Reading debate on 29 November last year, when the House approved the principle of the Bill by a majority of 55, showed Parliament at its best. I hope and believe that this Committee, as it goes through the Bill line by line, will do so in the same considered, respectful and measured manner.
Danny Kruger
I completely endorse that last point made by the hon. Lady. Does she remember how many Members on Second Reading—including, I think, herself—made reference to the judicial stage of the process and specifically to the High Court judge? Over 60 colleagues have stated on the record that they voted for the Bill on Second Reading because of that safeguard. Does she acknowledge that point?
Kim Leadbeater
I do acknowledge that point—absolutely, as I have acknowledged, the role of a High Court judge is really important in this process. That role will remain with the amendment I have tabled. It will also take account of the very clear evidence we received during the oral evidence sessions from psychiatrists, social workers and other professionals who feel that they have an important role to play in this process. Indeed, I heard the hon. Gentleman say he agreed with that on the radio this morning. It is very important that we hear from those experts. There is no point in having witnesses if we do not listen to what they have to say.
The Chair
Order. I remind Members that they should keep to the amendments being debated.
Kim Leadbeater
Thank you, Ms McVey.
I hope and believe that the Committee will take the same considered, respectful approach that we have taken previously. We have been asked by the House to look at where the Bill can be improved and to amend it, so that Parliament can be presented with a piece of legislation that is robust and workable in order to meet the objectives it is designed to achieve. Most—if not all—the amendments tabled in my name, have been drafted with the help of parliamentary counsel and officials in both the Department of Health and Social Care and the Ministry of Justice. The Government are committed to making the Bill workable and operable, while maintaining a position of neutrality.
I am grateful for the tremendous hard work that has gone into this to make a well-drafted Bill even better. I know the Ministers on the Committee, although remaining neutral, will be here to explain, where necessary, why some drafting amendments were needed to meet their duty to the statute book. There is an old adage that says too many cooks spoil the broth. That may not exactly be parliamentary language, but we will have to bear it in mind as we go along. Over 300 amendments have been tabled—most of them with the intention of improving and strengthening the Bill. I thank all MPs, whether members of the Committee or not, for the time and effort they have put in.
We have a responsibility to maintain the integrity and coherence of the Bill as a whole, so it is evident that we will not be able to accept all amendments. Indeed, we may find ourselves rejecting amendments that sound entirely reasonable in themselves and that undoubtedly come from a good place, but that are perhaps better addressed elsewhere in the drafting. Others might have unintended consequences or create a degree of ambiguity or uncertainty that could undermine the legal authority of the legislation. That might be very good for the pockets of lawyers, but it does not make for good law.
The Chair
Order. I remind the Member that although a brief introduction is acceptable, we should be talking to the amendments in this group.
Kim Leadbeater
Absolutely, Ms McVey—thank you for allowing me to make some introductory comments.
Amendments 178 to 180, 182 and 193 simply clarify that only persons in England and Wales may be provided with assistance in accordance with the Act, and only medical practitioners in England and Wales can carry out the required roles at each stage of the process. Hopefully, this is a nice straightforward one to get us started.
The Minister for Care (Stephen Kinnock)
I thank my hon. Friend the Member for Spen Valley for her introductory comments. The Government will continue to remain neutral on the Bill and do not hold a position on assisted dying. I want to make it clear that I, along with the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, are speaking in Committee not as Members of Parliament, but as Government Ministers responsible for ensuring that the Bill, if passed, is effective, legally robust and workable.
To that end, we have been working closely with the hon. Member for Spen Valley and, where changes have been mutually agreed on by herself and the Government, we will offer a technical, factual explanation for the amendments. Therefore, I will not be offering up a Government view on the merits of any proposed changes put forward by other Members, but I will make brief remarks on an amendment’s legal and practical impact to assist Members in undertaking line-by-line scrutiny.
Sarah Olney
Yes, that is exactly what I am aiming to do. The hon. Member makes an excellent point. There is a wide variety of views on this, but in actual fact, much as I do not wish to question Professor Sir Chris Whitty, and I acknowledge his seniority as the chief medical officer, he was very much the outlier on this. Everybody else who gave evidence on the sufficiency of the Mental Capacity Act to determine someone’s capability to make this decision for themselves cast doubt on the idea that the Mental Capacity Act was the right way of doing it.
Kim Leadbeater
That is not quite accurate. I think we did have other witnesses who absolutely said that they had confidence in the Mental Capacity Act, and I will speak about them in this debate.
Sarah Olney
I look forward to the hon. Lady’s further comments, but as I said, the psychiatrists were very clear that they did not believe that this was a sufficient safeguard, and we should acknowledge that.
I was unable to put my question to Alex Ruck Keene KC during the oral evidence session, but he kindly agreed to give further evidence in writing in response to a letter I sent to him later that day. That exchange of letters has been published as written evidence. It was his position that, in actual fact, Professor Sir Chris Whitty misinterpreted the Mental Capacity Act when he gave evidence. There is no such requirement in the Mental Capacity Act that states that the more serious the decision, the greater the level of capacity that someone needs to have. Mr Ruck Keene’s view is that that was the common law prior to the Mental Capacity Act coming into force, whereas in actual fact the Mental Capacity Act does not require that the more serious the decision, the more capacity someone needs to be judged to have.
Dr Shastri-Hurst
My hon. Friend makes a valid point. I have concerns about public confidence in the Bill without that additional safeguard, as this is such a consequential decision, but of course any advance directive would be predicated on having gone through those two stages first before capacity is lost. I feel that on this occasion additional tightening is necessary so that the public can be confident that a robust process has been gone through.
The MCA is a tried and tested piece of legislation used by practitioners up and down the country. The hon. Member for Stroud uses it every day in his practice; I have to say that I did not, but I was not consenting patients for surgery every day. Every time I did so, however, I had those conversations. Capacity lies on a spectrum: if I am doing major abdominal surgery, the level of capacity required to make a decision will be much greater than if I am removing a small bump or lump on an arm.
As well as having been tried and tested by medical practitioners, the MCA has been tested in the courts, as the hon. Member for Penistone and Stocksbridge said. It has been right up to the highest court in this land, it has been robustly tested and it has been found to be good legislation. The risk we now face is that it will be replaced not only with a new legal concept, but with an entirely different process for assessing capacity in this setting. Although there may be good intentions to improve the system, that will only add to the folly of it and overcomplicate the issue.
Kim Leadbeater
I am sorry that it has taken me a while to find the relevant provision of the Bill. The discussion on the advance directive is a really interesting one, and I am glad that we are having it. Is the hon. Member reassured that clause 18(4) is very clear that on the day that assistance is provided to a patient, a doctor has to assess once again their capacity to make the decision to end their own life, check again that there is a clear, settled and informed wish to end their own life, and indeed check everything again on the day, including capacity? I believe that that will negate the issue around the advance directive.
Dr Shastri-Hurst
The hon. Member makes a reasonable point. I agree with her on many issues, but on this issue I have some reservations. Clause 18(4) says:
“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided…has capacity…has a clear, settled and informed wish to end their own life”.
Of course, under the wording of section 26(1) of the Mental Capacity Act, that decision can be made at an earlier time and deemed to have currency, once capacity has been lost, for its enactment at a later date. I think that there could be a minor tightening of the wording or reassurances from Government to address that, but it is an important point to raise and air.
Dr Shastri-Hurst
That is one of the additional safeguards in the Bill. This Bill has more in-built safeguards than any similar piece of legislation across the world. I think the hon. Gentleman makes a valid point: when a doctor has concerns about somebody’s mental state, they can escalate the case and seek further, specialist opinion.
Dr Shastri-Hurst
I will make some progress, if I may, because I think I have indulged your patience for far too long, Ms McVey.
I am cautious about introducing this new test. I may not have persuaded everyone, but I have set out my reasons. We risk making the system overcomplicated. We would move away from the well-established mechanism under the Mental Capacity Act and into tiger country, with untried and untested systems that the courts have not considered, which will inevitably lead to challenge. There is no need to do that, because we already have robust mechanisms in place and doing so will merely lead to ambiguity and potential complications.
This is not me reaching this conclusion in isolation. Of course, there will always be voices on different sides of the debate, and we can frame the evidence we have heard to favour one set of arguments over another. However, I am significantly persuaded by the chief medical officer, given his wide experience as not just a clinician but a public policymaker. In his evidence to the Committee on 28 January, he said:
“It is not clear to me what problem people are trying to solve by doing that,”
—he means moving away from the Mental Capacity Act—
“given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q14.]
It is that foundation that we are building on, and it is central to how these things operate in practice.
Although I understand the position of the hon. Member for Richmond Park, and I have a degree of sympathy with those who support the amendments, I invite them to reflect, in the time we have left for this debate, on whether the amendments achieve their stated aim. Do they make the Bill better or do they make it more complicated and convoluted? I say that they make it more convoluted and that, despite the best of intentions, they should not be supported.
Daniel Francis
My hon. Friend the Member for Penistone and Stocksbridge knows I am an ally on many of these issues, but I will humbly disagree with her on some matters. I am not a lawyer or a doctor, but like many people here I speak from lived experience. I speak as the parent of a learning-disabled child, so I see the kinds of decisions that have to be made day to day, and the kinds of arguments and conversations that have to be had with people who presume that my child has more or less capacity than she has. Believe me, that is a constant, daily battle for me and my wife.
My daughter has 12 words and a severe sight impairment, which makes it very difficult for her to make some of her decisions, as well as other complexities—predominantly her cerebral palsy, which caused a brain injury at birth. Therefore, in my own way, although I am not a lawyer or a doctor, I have become a bit of an expert on some of the capacity issues that people encounter day by day. This morning, as I do most mornings, I read to her the three choices for her breakfast. I give her a bit of time to think about them and then I repeat them. We get yes or no to those three choices, and that is the choice she makes. Because of her severe sight impairment, when I put those three options in front of her, I have to lift them up in front of my face so that she can see them; if I put them much lower down, she would not be able to see them and make a choice. She would be able to make the choice through pointing if it was within a certain range.
I have doctors calling my wife and me all the time, asking to have a conversation with my daughter, despite their having read the notes saying that she is an 11-year-old with 12 words and a severe sight impairment. I therefore query—I will refer to some of the oral evidence in a moment—how well some aspects of the Mental Capacity Act are currently being carried out. Equally, I deal with people who suggest that she has a greater level of capacity than she does.
I accept—I have had this conversation with the hon. Member for Spen Valley on a number of occasions—that this legislation would not be applicable to my daughter. However, we heard in evidence from Mencap that the vast majority of people with learning disabilities in this country are not in the same position. They are living their day-to-day lives, living in supported accommodation and making the kinds of decision we have discussed in this debate, such as buying coffee and going to the bank.
As a result of my 20 years as a councillor, and in the last 11 years since our children were born, I have become involved with a number of local disability charities, and I know the decisions that people make when their child is at that transition age. They are trying to understand the complexity of taking a power of attorney for a child, as well as other decision-making issues. I spend a lot of time with parents who do not put those measures in place, because they do not understand the complexity in terms of age. We could therefore have a young adult relying on doctors who do not know them and on a judge—I have not seen an amendment on that issue, so I am still talking about a judge—to make a decision about capacity.
Kim Leadbeater
I do not particularly have a question to ask my hon. Friend, but I want to pay tribute to him for engaging so positively with the scrutiny of the Bill and for the very personal experience he has shared with the Committee. I reassure him that I will do everything I can to work with him, as I have so far through this process, because his fears are real, and I hear them. We have a job to do through the Bill to solve the problems that exist for people who are dying, but we do not want to create other problems. I am happy to continue to work with him to ensure that we address as much of that as we can through the Committee.
Daniel Francis
I thank the Member in charge for her comments. That is the conversation we had when she invited me to join the Committee, and we will continue to have conversations as amendments come forward.
My concern is about some aspects of the Mental Capacity Act, which was not written for these scenarios, and the hon. Member for Richmond Park talked in particular about the statutory principles in it. I am not an expert on these issues, and my hon. Friend the Member for Stroud behind me is more of an expert on some of them. However, there is no obligation in the code of practice under the Act to consult carers involved in a person’s life. The code says:
“if it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.
Therefore, given the way the Act and the code of practice are worded, there is no obligation in the scenarios I am discussing.
There is another issue I was going to raise before I took that intervention. Mencap does considerable hard work. At my local branch, there are many people whose parents are in their 70s and 80s and have cared for their child all their life. I am not being rude, but their child, who is in their 40s or 50s, does feel like a burden to their parents. They know the obligation their parents have to care for them for their whole life. I ask Members to consider what the Mental Capacity Act says: those adults are at a level of capacity to make decisions, but they have been supported in those decisions all their lives and do not—
Kim Leadbeater
My hon. Friend cites some interesting observations from the oral evidence, and I welcome his doing so. I draw his attention to my amendments 186 and 198, which look at the training. This is something I feel passionately about. If the Bill were to pass, having gold standard training would be vital, as I said during that sitting. I will do whatever I can to embed that in the Bill, and I will certainly consider what that will look like in the instances that we are discussing.
Daniel Francis
I welcome that commitment and look forward to that discussion in due course.
Dr Hussain went on to say:
“Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]
Professor Owen said:
“That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 228, Q290.]
Dr Price said:
“I…refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 268, Q349.]
Danny Kruger
The hon. Gentleman’s intervention helps me to explain my point more clearly, which is that the new clause tabled by the hon. Member for Richmond Park builds on the terms of the Mental Capacity Act. It recognises the value of the terms, which have been well established in case law through the MCA—the ability to understand, use and weigh the relevant information.
The key difference is the word “fully”. The case law around the MCA allows for somebody to be deemed capacitous even though their judgment might be impaired. What is proposed in the new clause is the closing of that lacuna, so that it would not be possible for someone to get an assisted death if their judgment was impaired. That is the key difference.
It is also important to exclude the MCA because of the thicket of complications that it would entail. We have heard about the importance of simplification. A much simpler and better way to do the entirely novel thing that we are proposing, which is to authorise assisted suicide by the state, is to have a new definition.
Kim Leadbeater
I do struggle with that terminology. This is not assisted suicide by the state. The state is not involved. It is the person making an autonomous decision based on their choice at the end of life. I will say on the record that the term “suicide” is not accurate for the cases we are talking about. The people we are dealing with are not suicidal. They very much want to live; they do not want to die, but they are dying. It is important that we have that on the record.
Danny Kruger
I think it is totally valid for us to have this argument about terminology periodically. I will repeat the point that we have made before, which is that we are actually amending the Suicide Act 1961—or rather, we are disapplying that Act—in the process set out in the hon. Lady’s Bill. There is no getting away from the fact that we are talking about assisting suicide. I am afraid that I will continue to use the term, and I hope the hon. Lady will forgive me for that.
I am arguing that the MCA is a complicating factor in the process that is being proposed for the Bill; it makes things much more difficult and complicated. The point has already been made—the hon. Member for Richmond Park put it very well—that, in the case for the MCA, a lot of weight is being put on the evidence from Sir Chris Whitty, suggesting that the MCA works very well. I point out that Sir Chris made a significant mistake in his evidence, when he said that
“the more serious the decision, the greater the level of capacity that someone needs to have.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
There is no such requirement in the Mental Capacity Act. Of course, we would hope that doctors would take a serious decision more seriously than a trivial one, but there is no such requirement. I cite Alex Ruck Keene KC, who wrote to the hon. Member for Richmond Park after his evidence session; with the greatest of respect to Chris Whitty, the fact that he got that wrong does not inspire confidence in his comments that the Mental Capacity Act is well understood by doctors throughout the country. I very much echo that. We have had so much evidence on how the Mental Capacity Act does not work well in practice that I think it was regrettable for the chief medical to have made the Panglossian observation that every doctor interprets it in exactly the same way and it works perfectly everywhere.
The Mental Capacity Act does not detect coercion. We will discuss coercion more in subsequent debates, but that Act is certainly not the safeguard against it. Professor House made some comments to us about Down’s syndrome and about diagnostic overshadowing. That is a very important concept. I am afraid to say that it is frequently the case, regarding people with severe disabilities, that capacity—or, indeed, incapacity—is not correctly observed because the medical professional will not see beyond the more presenting of their conditions. Observing capacity in someone who does have disabilities is often mistaken; it is harder than it is regarding other people.
Danny Kruger
The simple answer is yes, I do. I think it is a causatively different decision. In fact, this whole Bill entails causative differences between those decisions. I will come to that point more in a moment.
Professor Owen made an important point to us regarding capacity. He said:
“You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability.”
He talked about
“pressure within a family, let us say, which is often not malign in its intentions, but it exists.”
and about situations
“where there is an impairment and also an interpersonal pressure”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 234, Q297.]
Although we are not talking at this point explicitly about coercion and family pressure, the issues around capacity and coercion are nevertheless intertwined, and it is often very difficult for doctors to determine what is really going on. Again, the challenges around capacity are intense.
The point has been made by hon. Members that under clause 9(3)(b), if the second doctor in the process is in doubt about capacity, they “may” refer the person to a psychiatrist, but the clause in fact refers to “a registered medical practitioner” who “has experience of” the assessment of capacity—so not a psychiatrist, but just someone who has experience, whatever that means, of the assessment of capacity. It is not totally obvious what that means. Amendment 365 has been tabled overnight by the hon. Member for Bath (Wera Hobhouse) which would mean that both the first and second doctor, and indeed the court, if we are allowed to have a court process, “must”—not “may”— refer the person to a psychiatrist. That is not just if they are concerned about capacity, by the way. The court, or whoever it is, must conclude that there is no
“impairment of judgment arising from a mental disorder or other condition”.
I very much welcome that amendment and I hope that we will pass that in due course.
Kim Leadbeater
On that point about clause 9(3)(b), as I think was mentioned earlier, an amendment has been tabled by the hon. Member for St Albans (Daisy Cooper)—an amendment that I would support and I hope the Committee will—that would indeed turn the “may” to a “must”, so that there has to be a referral to a psychiatrist if there is any doubt from either of those doctors.
Danny Kruger
That is excellent news. For the first time so far in the course of this debate, we have a strengthening of the Bill from the hon. Member. That is great news—we can chalk that up as a victory, and as good sense breaking out. I am grateful for that. Let’s see what more we can achieve.
The point that I want to make is that we are in the foothills of understanding the effects of depression, cognitive impairment and social pressure on the decision to end life. That is a point made strongly by a series of witnesses to us in both oral and written evidence: we are still very much in the early stages of understanding how capacity interacts with mental illness, disability and coercion. Then, into the mists of vagueness, we are proposing to insert this single clunking, clumsy question: “Is there evidence of incapacity?” I strongly suggest that the abuse of the Mental Capacity Act that we are seeing here is not a way of simplifying the process of ensuring that there are a small number of strong safeguards; it is a great complication of the process and introduces more complexity, as we see from the many additional things that clinicians should consider. That is in direct contradiction to the principle of the Mental Capacity Act, which simply asks the question: “Is there capacity?”
The point has been made that there is more to the Mental Capacity Act than simply the question of capacity. There are concepts of best interests and supporting decision making. As the hon. Member for Penistone and Stocksbridge suggested, it is a cumulative process. The Mental Capacity Act entails not only the question of capacity but the consideration of best interests and whether we are supporting the decision making of an individual. I am not sure how those terms apply in a situation of assisted dying. It is not similar or comparable to the sorts of decisions that the MCA is intended to apply to.
Terminally Ill Adults (End of Life) Bill (Ninth sitting)
Kim Leadbeater ExcerptsTuesday 11th February 2025
(1 year, 6 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 11 February 2025 - (11 Feb 2025)
Danny Kruger
We are trying to avoid suffering, pain and bad deaths. We all share that view. Indeed, later amendments look explicitly at the purpose of an assisted death and the question of the avoidance of pain. I am simply making the important distinction between the decision to withdraw treatment and the decision to administer fatal drugs, which, as I say, are qualitatively different—different in principle and different in practice.
Kim Leadbeater (Spen Valley) (Lab)
To build on the point made by the right hon. Member for North West Hampshire, this is the heart of the issue. You are right that they are slightly different things.
Kim Leadbeater
Sorry, Sir Roger. The hon. Member is correct. It gets to the heart of whether we think this is the right thing to do. The Bill Committee’s job is to put that decision back to the House. It is not for us to decide today; it is for us to have the discussion about how we can improve the Bill and send it back to the House.
The hon. Member is absolutely right to say that it gets to the heart of the issue. I think dying people should be given that choice. In the same way that they are given the choice to have treatment withdrawn or the machine turned off, they should be given the choice to take control and to have the autonomy and dignity that assisted death will provide.
Danny Kruger
The hon. Lady has expressed very well her whole purpose for the Bill. In a sense, all the debates we are having about safeguards, protections, process and eligibility are secondary to her purpose, which is to give autonomy to patients. One has to ask about the purpose of the safeguards, particularly the one on people having to administer the drugs themselves. In all jurisdictions where physician-assisted suicide is legal, that is the option that people overwhelmingly opt for—I certainly would if I were in that situation.
The hon. Lady is right, and that is what she is trying to do: she simply wants the Bill to go through. I take strong issue with her implied point that our purpose here is simply to work out the Bill’s implementation. We are looking at each clause, line by line, to decide whether it is safe or not. As she said herself at the time, the decision on Second Reading was a vote in principle to continue the discussion, which is what we are doing now. We are closely and minutely examining whether every clause is safe.
Kim Leadbeater
On that point, it is not an either/or. It is not just about passing legislation that improves choice and gives autonomy and dignity to dying people, and indeed fixes the current failings of the law as it stands, as we have discussed in great detail. It is about providing safeguards that make sure that is done safely, securely and robustly, and that address the issues and concerns we are discussing. It is not an either/or and it is important to make that distinction.
Naz Shah
I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.
Kim Leadbeater
In respect of those numbers, it is important to be really clear that the vast majority of those circumstances were in the Netherlands and in other jurisdictions that have a much broader set of eligibility criteria than the Bill. We are talking about a very small number of cases in jurisdictions with a similar set of criteria to ours. It is important to make that point.
Kim Leadbeater
I do not think that the hon. Member for Solihull West and Shirley is saying that this is about people with eating disorders or anorexia; he is asking about people who are terminally ill who stop eating and drinking. They do that as a course of action to essentially end their own lives. It does happen on a fairly regular basis. We have had testimonies from families who have watched loved ones essentially starve themselves to death. It is different from having an eating disorder or being anorexic.
Stephen Kinnock
The hon. Member makes an interesting point. I simply reiterate that this is a very dynamic Bill Committee; I believe that 362 amendments have been tabled. Given the Government’s focus on establishing the Bill’s implementability, the coherence of the statute, the legal dimensions and the complexity of what we are dealing with, we took the position that it was better to wait for the Bill to clear Committee stage before producing an impact assessment. To do otherwise could have involved a large amount of second-guessing based on radical changes that might well have come out of the Bill Committee. I reiterate the logic of that sequencing.
On the point about the established legal framework, which clinicians have been applying since 2007, “capacity” would still be used for other decisions about care and treatment.
I turn to amendment 202, tabled by my hon. Friend the Member for Spen Valley on the advice of the Government. It ensures that the assessment of “capacity” is utilised by the assessing doctor, and corrects a typographical error in clause 9 to ensure that an assessment of capacity will apply consistently throughout the Bill. As I said earlier, how and whether the law on assisted dying should change is a matter for this Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee when considering potential changes put forward.
Kim Leadbeater
I will try to keep my comments brief. It is excellent that we have had such a thorough debate on this particular issue, but I am also very conscious of time.
I will do the quick and easy bit first. As the Minister has just said, amendment 202 is to correct a typographical error in the initial drafting of the Bill—despite the high level of expertise involved in the initial drafting of the Bill, that one managed to sneak through. The amendment would simply change the word “capability” to “capacity”, to be consistent with the rest of the Bill.
I now come to amendments 34 to 47 and new clause 1. As we have discussed, those would replace the concept of “capacity”, which is based on the Mental Capacity Act, with a new concept of “ability”. I think that suggestion is coming from a good place and is made with good intention by the hon. Member for Richmond Park; I thank her for her positive engagement with the Bill. However, based on the oral evidence that we received, particularly from the chief medical officer and many other experts, the suggestion would seem unnecessary given that we already have—as has been discussed at length this afternoon—a very well established piece of legislation that is effective in this regard.
The primary purpose of the Mental Capacity Act is to promote and safeguard decision making within a legal framework. As the CMO and other colleagues have said, issues around mental capacity
“are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
That view was supported by Yogi Amin, an expert in Court of Protection work, human rights and civil liberties, who told us during the oral evidence sessions:
“It is well understood how capacity assessments are done, and it is ingrained”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]
Sean Woodcock
We all understand the evidence of the chief medical officer and why he and others, including Members here, prefer the use of the Mental Capacity Act. It is understood by doctors and it is used every day.
What this debate is fundamentally about is that assisted dying is not done every day. It is not something doctors are used to. As somebody who has said that she wants the toughest safeguards, it is incumbent on my hon. Friend the Member for Spen Valley to understand that what those of us who have concerns about the Bill are saying is that this is unusual. It is a step into the dark.
The amendment tabled by the hon. Member for Richmond Park is about making sure that the issue is not just about what doctors are used to, but that there is another safeguard to ensure that people are not being exploited. Does my hon. Friend understand that?
Kim Leadbeater
I do. I take my hon. Friend’s comments on board and I will come to address them. As other colleagues have established, it would seem nonsensical to try to introduce a brand new legislative framework rather than use an existing piece of legislation that has stood the test of time. Indeed, Professor Laura Hoyano, emeritus professor of law at the University of Oxford, who has worked in civil liberties, human rights and domestic abuse, said:
“It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts.”
She talked about the withdrawal of medical treatment, as others have this afternoon, and went on:
“It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so...Doctors have to make those assessments all the time.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 227, Q289.]
In the light of that evidence, it would seem unnecessary to create a whole new legal framework around the new concept of ability.
However, although I think the Mental Capacity Act is the correct legal framework to use, I strongly agree with palliative care doctor Rachel Clarke when it comes to additional training on assessing capacity for the purposes of this Bill, which relates to the point made by my hon. Friend the Member for Banbury. She strongly encouraged us to give serious consideration to this matter, saying:
“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training from day one of medical school onwards.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
The CMO also suggested that training on capacity, as has been discussed, may require some slight adjustment. He said:
“There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have...That training should be generic, but may need some adaption.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30-31, Q3.]
I agree. As I have said, I think one of the best things about the Bill is the opportunity it gives us to develop gold-standard training around end-of-life care, end-of-life conversations and choice for terminally ill people. That should include training in assessing capacity specifically for the purposes of the Bill, for a decision that is clearly of such a high level of consequence and seriousness.
Daniel Francis
I absolutely accept what my hon. Friend says about training. I know we have separately discussed places in the Bill where we could replace the word “may” for “must” to make the safeguards stronger. However, I come back to the same points as I made to the Minister. The Mental Capacity Act code of practice, which I presume is what we will be relying on, says:
“If it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.
However, it does not say “must”, and for adults with learning disabilities particularly, that remains a principal concern. Chapter 2 of the code of practice says:
“It is important to do everything practical...to help a person make a decision for themselves before concluding that they lack capacity to do so.”
I know this is not my hon. Friend’s intention, but that is the wording that would lead a doctor to have to help somebody make this decision. My question is: how will we overcome that issue?
Kim Leadbeater
That is a point worth making, and something we will look at through the amendments that my hon. Friend has proposed. I am very happy to look at those, as I have already said, but the idea of creating a whole new concept of ability seems wholly unnecessary in the context of a piece of legislation that has stood the test of time for over 20 years.
I come back to training. Although the full details of the training programme that would accompany the Bill cannot be put on the face of the Bill, I have discussed the issue at length with officials in the Department of Health and I have included amendments to that effect. Amendments 186 and 198 specifically state that training must include assessing capacity and assessing whether a person has been coerced or pressured by any other person. Further comprehensive training will be included in regulations set out by the Secretary of State, and the chief medical officer is confident that that is the correct way to proceed.
Furthermore, as has been referred to, there are multiple opportunities within the process to assess capacity by a range of professionals. I have also tabled new clause 8, which would create a duty for the Secretary of State to consult before making regulations relating to training. Within that, there would be a duty to consult not only the Equality and Human Rights Commission, which is important, but persons with expertise in matters relating to whether persons have capacity and whether persons have been coerced.
Naz Shah
To go back to the point about multiple opportunities and capacity, my understanding from this morning’s Guardian is that an amendment has been tabled—it was mentioned earlier; I do not know whether others have had sight of it, but I certainly have not—on potentially having a panel instead of a judge. My hon. Friend the Member for Bexleyheath and Crayford has just asked a question, and my hon. Friend the Member for Spen Valley responded by saying that she would come back to it, but my concern is that we are looking at the clause now, and once we have discussed it there will be no going back to it. I am trying to understand at what stage in the process she will come back and fix it. If we are going to address it under clause 9, clause 8 or wherever, how will that impact on clause 1? How will it address the issues that we are debating right now?
Kim Leadbeater
At the moment, we are addressing the fitness for purpose of the Mental Capacity Act, but there are other amendments that will take on board some of my hon. Friend’s points, particularly about people with learning disabilities. I am very happy to look at that. I am working to table an amendment before the recess, to give the Committee an opportunity to look at it in great detail. My hon. Friend the Member for Bradford West is right that that would provide another opportunity for assessment of capacity with the involvement of psychiatrists and social workers, who have said that that is their expertise and what they excel in, and who feel that they have a valuable role to play in the process.
Naz Shah
At what stage will we know how the amendments that my hon. Friend proposes have an impact on clause 1? If we make amendments later in the Bill, how will that have an impact on the amendments that we have discussed this morning, in particular in relation to capacity?
Kim Leadbeater
Clause 1 is very specifically about the Mental Capacity Act, on which we should get a chance to vote this afternoon. Other amendments can be tabled ahead of Report, but the fitness for purpose of the Mental Capacity Act is a concept on which we will get a chance to vote this afternoon. Other things can be added to the Bill that would enhance other aspects, but the point that we have discussed this afternoon is about the fitness for purpose of the Act. There are different views on the Committee, which is understandable. I believe that using the well-established legal framework of the Mental Capacity Act, introducing gold-standard training and consulting experts in assessing capacity will mean that there is no need to develop a whole new framework around the concept of ability, particularly on the points made by my hon. Friend the Member for Penistone and Stocksbridge. I therefore do not support the amendments.
Sarah Olney
The hon. Member for Solihull West and Shirley used an arresting phrase this morning: he said that to abandon the Mental Capacity Act would take us “into tiger country”. The concept appeals greatly to me, but what I would say to him and other Committee members is that it is the Bill itself that takes us into tiger country. It is unprecedented, and this is very new territory for legislation in this country. That is the tiger country, right there. If we are going to let those tigers out into the wild, we need to ensure that the British public, and particularly the most vulnerable members of it, have the right protections. That is what the amendment seeks.
There was not a consensus among those who gave oral or written evidence that the Mental Capacity Act is a sufficient safeguard for the purpose proposed in the Bill. I am grateful to the hon. Member for Bexleyheath and Crayford for his speech this morning, which illustrated vividly for all of us how the Mental Capacity Act is used in practice. I particularly thank him for his personal reflection.
Let me reiterate what the amendment seeks. The Bill proposes to judge mental capacity for a decision to request assisted dying in relation to the Mental Capacity Act 2005. There are elements of the Mental Capacity Act that are tried and tested, and should be retained in assessments of capacity in relation to this legislation, but as per the written evidence of the Royal College of Psychiatrists, the Mental Capacity Act is not sufficient for the purposes of assisted dying, because it cannot distinguish between those who suffer from a mental disorder and those who do not. It needs to be adapted for the purposes of the Bill.
My amendment 34 would therefore substitute “capacity” with “ability” and reserve to the Secretary of State the power to define ability for the purposes of the Bill. To me, that is a pragmatic response. The debate in the Committee Room today reflects the lack of consensus among the experts who gave witness. That is why I think the matter is better resolved by those experts giving advice to the Secretary of the State, so the definition of ability can be expertly decided on.
The difference between choosing assisting dying and choosing to end treatment was a big topic of debate both this morning and this afternoon. It goes to the heart of the different approaches that people take towards the Bill. I support the observation from the hon. Member for East Wiltshire that the difference is between dying of an illness itself, or dying of the effects of the approved substance, as laid out in the Bill. To me, that is a substantial and material difference, so our approach to establishing capacity should reflect that.
The hon. Member for Reigate made an important point about the difference between a passive and an active choice. That very much reflects what I am trying to achieve through the amendment, which would allow us to strengthen the safeguards around the assessment of capacity. Given that there was not a consensus, among the experts who gave evidence, on whether the Mental Capacity Act is sufficient for the purpose, the pragmatic step is to allow the amendment to create the conditions under which a stronger safeguard can be adopted if necessary.
Question put, That the amendment be made.
Kim Leadbeater
On a point of order, Sir Roger. I am not sure that we have voted on amendment 202.
The Chair
We will take it when we get to it. Thank you for raising that point, because this is a learning process for a lot of people. We decide on the amendment that is moved; we will then decide on any further amendments, if any Member wishes to propose them, in the order in which they appear in the Bill. In this case, that is not yet.
Kim Leadbeater
Did the polling ask people’s view on whether terminally ill homeless people should have access to assisted dying, or on whether it should be offered to homeless people just for being homeless? That would seem very strange.
Danny Kruger
The hon. Lady might well be right. I totally take that point. I dare say it is people who are homeless. I think the question put was, “Should those who are homeless simply be able to ask for assisted dying?” People in this country say no. In Canada, asked the same question, a quarter of people say yes. The effect of the law has been to institute this principle of assisted dying being an acceptable choice under any circumstances, which is indeed, I am afraid, what happens.
I will end with a powerful quote from Fazilet Hadi, who spoke to us representing disabled people. She said:
“This Bill is not an abstract exercise; it will land in a society that is rife with inequality.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 185, Q242.]
She said that the society the Bill will land in is the thing that needs to change, not the Bill. She thinks we need to change our society before we do anything like introducing assisted dying. I agree.
Kim Leadbeater
My hon. Friend has listed certain categories of people, and we will come on to the definition of terminal illness. I am confident that, given the definition of terminal illness in the Bill, some of the groups of people she has talked about will not be included in its scope.
Naz Shah
Where does it specify that? I know we are going to debate that subject later, but right now there is nothing that gives me assurance that those people will be excluded. Unless there is an amendment that my hon. Friend the Member for Spen Valley will support, the Bill, as drafted, would still apply to somebody if they decided not to carry on with treatment, or if they decided they did not want to take their insulin or other medication and that would lead to their death. I am happy to give way to my hon. Friend so that she can explain how she is going to deal with that.
Kim Leadbeater
I will. Let me read from the Bill. The definition of “terminal illness” under the Bill is that
“the person has an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.
The conditions that my hon. Friend is describing can be reversed by treatment and are not inevitably progressive. We will come to that debate in due course, but that definition is crucial.
Naz Shah
I beg to differ on the wording that my hon. Friend just used. It actually makes my point. As it stands, if I were an insulin-dependent diabetic—and I have been so on three occasions, with my children— I could say that if I stopped taking that insulin, I would become terminally ill. In the Bill as it stands, and as it is drafted, I would meet the criteria.
Kim Leadbeater
My hon. Friend would not meet the criteria. She might be describing a condition that cannot be reversed, but it is the “inevitably progressive” part that we are talking about. Because it can be treated, it is not an
“inevitably progressive illness, disease or medical condition”.
The Chair
Order. A debate about the definition of “terminal illness” will come later in the Bill, and it might help us all if we were to swiftly move forward to that point.
Danny Kruger
I am grateful to my right hon. Friend. I particularly applaud his amendment’s aspiration to ensure that the doctors’ conversations are properly recorded.
Kim Leadbeater
Further to the comment from the right hon. Member for North West Hampshire, all of that will obviously be recorded on the patient’s medical records as well. The idea that it is not being recorded is just not correct.
Danny Kruger
The decisions will be recorded, but the conversations that the hon. Lady stipulates should take place under the Bill need further recording, in my view, with further evidence of what was discussed in order to ensure that the safeguards have been properly applied. I also point out that for the chief medical officer to effectively carry out the review under clause 34, they must have evidence available, not just a few schedules that have been signed off.
Likewise, I am glad to say that the opportunity remains for a legal appeal, in so far as we still have a judicial process, but I am concerned that the lack of any documentary evidence makes the application difficult for any external party or the Court of Appeal to review. Currently, there is a great paucity of information that the High Court judge considering the application can request. I think it is important that the High Court judge—or, indeed, the panel, if we move to that approach—should have access to a much fuller range of documentation to ensure that the process has been properly followed.
Terminally Ill Adults (End of Life) Bill (Seventh sitting)
Kim Leadbeater Excerpts(1 year, 6 months ago)
Public Bill CommitteesRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Dr Opher
It was clause 26, sorry.
Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted.
There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents.
The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential.
The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests.
Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision.
On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.
Kim Leadbeater (Spen Valley) (Lab)
Q
I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?
Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.
I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.
You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.
I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.
Danny Kruger
Q
Professor Hoyano said that the person in the street would not see the difference between a patient requesting to die by the withdrawal of treatment versus the active administration of fatal drugs, whereas I think you said, Professor Owen, that you did see a profound difference between that decision on the part of the patient and also, presumably, the act on the part of the medical professional, in the case of either the withdrawal of treatment or the administration of fatal medication. You said that you would be happy to draw that out; could you do so?
Professor Owen: Yes. I am happy to try now, but also to do it further with some written submissions if that would be helpful, because it is such an important point. First, for the man on the street, or the person on the bus, one thing to remember—this comes out in the public opinion polling—is that when you ask about assisted dying, some people think that that is access to palliative care. There is a degree of misconceptions that are out there in the public that are important to bear in mind.
On the distinction between the decision around the refusal of life-sustaining treatment and the decision regarding assisted dying, what are the similarities? Well, they are both about life and death. What are the differences? One is a refusal; one is a request. One is traditionally considered to be about bodily integrity—it is the so-called shield of the person, or the patient, against the intervention on the body that is being made by the medical profession. You are giving the patient an important right, which is a shield-like right. That contrasts with a request for assisted dying, which is a request. You are involving other people in an act that is an act of ending one’s life. That is not something that the medical profession has been comfortable with, going back thousands of years.
So you can discern a number of differences. Could you reduce those differences to one thing and one thing only, and be particularly precise about it? Probably not. I think you are talking about differences that cluster and group, and which we overall accept as a difference of kind.
The other issue here that is important is intention. When you are assessing somebody’s decision to refuse a life-sustaining treatment, the doctor there does not have the intention to end a person’s life. That would be a concerning intention were it there—and sometimes it is looked for, actually, if it is disputed. But of course, when a doctor is involved with a process where somebody is seeking assistance in the ending of their life, it is quite difficult to say that the doctor does not have an intention to end life.
One could go on with a discussion of the differences, but the similarity is that we are talking about life and death.
Kim Leadbeater
Q
Let me come back to the content of the Bill, and to some of your points, Professor Owen. In terms of capacity and coercion, I think we are absolutely having these really important conversations. What concerns me a little bit, though, is whether we are saying we are not confident that two doctors, potentially a psychiatrist and an oncologist, and a judge can make assessments of capacity and coercion between them. What does that mean for things that are happening at the moment? We have talked about the withdrawal of end of life treatment and those things; those assessments must be being done now, all the time, but at the moment there is no legal framework around that. Surely, putting a legal framework around that and having all those multidisciplinary people involved has got to be a positive thing. Professor Hoyano, I would appreciate your thoughts on that.
Professor Hoyano: As I say, whereas I completely respect Professor Owen’s expertise in this as a psychiatrist, for me as a lawyer the question of capacity is a yes or no, necessarily. But capacity is always determined by the Court of Protection in respect of the decision that must be made by the person concerned: do they have the capacity to do it?
When we are talking about a determination of capacity, and also about coercion—which of course is part of capacity in a sense, because capacity is the autonomy of decision making—you are going to be having a very focused inquiry. It is not an inquiry into whether a person has capacity to manage their financial affairs. I probably do not have that capacity, but on something like this I would have capacity. It is important to recognise that it is a yes or no question, which the law has to draw and does draw, depending on the expertise of psychiatrists like Professor Owen, but also forming its own judgment from its own experience, which is why I think the Court of Protection really is the place where this should be.
There is one aspect of the Bill that worries me a lot, and that is the number of people who will be excluded by the provision that the medication must be self-administered. This would mean that Tony Nicklinson, who went all the way to the House of Lords to try to get the right to die, could not have it under this Bill, because he was paralysed. He was a tetraplegic, basically—he was paralysed from the neck down, with limited movement of his head, from a stroke. He lived for seven years with that condition and he would not have been able to self-administer. In fact, when he was denied by the House of Lords—anyone who has seen the Channel 4 programme will have watched him wail in despair—he refused all nutrition and hydration from that point until he died. That was the death he did not want, and I think we need to recognise that there are problems like that. In 2023 in Canada, across the entire country, only five patients opted to self-administer the medication—only five. Even when patients were capable of doing it, they wanted the doctor to do it instead, so let us remember that as well, please.
Dr Ward: Can I make a quick point about self-administration? This is something that in Scotland we looked into in great detail. In Scotland, we chose self-administration specifically because it does not just include ingestion or swallowing. There is a range of ways in which you can self-administer the medication, and I am happy to provide that information to the Committee if that would be helpful.
Lewis Atkinson
Q
Professor Owen: Good question. On the point about that interaction issue, it is not just me picking it up; it is the courts and the Court of Protection particularly. If you are interested, it is footnote (11) in the written submission from the Complex Life and Death Decisions group. The point that you make is well taken from my point of view. You have two doctors, essentially, doing the assessment. Some doctors can be very good at assessing social circumstances; some are not so good. I think it would be preferable to try to get a law that gets sight of social circumstances; one way of doing that may be to insert a requirement that a suitably experienced social worker is involved, so that there is some sensitivity to those contextual, relational, interpersonal effects, which, as I know you are aware, can be very subtle. A lot of these things are extremely difficult to pick up. They are easy to miss and, even when you are aware of them, there can be dilemmas about what to do with them.
Professor Hoyano: Might I add a postscript to that? A model that we could consider in this context is CAFCASS—the Children and Family Court Advisory and Support Service—in the family courts. It is a body of experts—civil servants, in effect—but they are independent and they are accustomed to dealing with specific context with social workers, for example. They investigate what should happen to a child in public law or private law proceedings. It occurs to me that something like that—a report from an equivalent body to the solicitor’s office, which I mentioned before—could be a very good way of building that in, because I completely agree that social workers are likely to be more professionally attuned, by virtue of their training and experience, to looking at the wider context.
Kim Leadbeater
Q
Dr Richards: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust.
One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.
Kim Leadbeater
That is really helpful.
Dr Richards: I do not think there is any evidence that there is a loss of trust in doctors post legalisation—I just wanted to add that.
As I said in response to the earlier question, this is a categorically new thing that would be coming into society, which would cause cultural change in how we approach, think about and anticipate dying. It is a big deal—I know you all know that. Accompanying it, therefore, there needs to be really sensitive information delivery that is appropriate across society and that will alert people to this. In particular, if you are going to have a system where doctors are not allowed to raise it with patients, people need to know about it. That is one thing.
Reducing people’s fears is also important. I mean, there are so many misconceptions about assisted dying, even among people who have spent quite a lot of time reading about it and researching it. It is a very simple thing, but the discourse in society has been going on for so long that there is a lot of misunderstanding.
Kim Leadbeater
Q
Dr Richards: Misunderstandings of what it is? Fundamentally, that it is not based on the principle of autonomy and that it is something that can be done to you, without your consent. You would not want the general public to think that. At a very basic level, it is understanding that assisted dying—the very phenomenon that that term encapsulates—is a phenomenon that starts with the patient. It is a request made by the patient because of their subjective assessment of their quality of life as they are dying. At a very fundamental level, you would want to communicate that to the public. It is a huge piece of work to have to create an informational context that is variegated according to the starting position of people’s knowledge base around it, and to bring in something that does not scare the public and so they see it as something that can be positive.
In jurisdictions that have legalised, even post-legalisation there continue to be elements that resist it. However, you start to see positive stories of the kind of ceremonial aspects that can come when you can time death. There is a whole cultural piece around new rites—new rites around dying that are being created when people choose to have an assisted death, and the new dying time or space that is opened up there, as well as the intentional actions that can happen from people’s social groups. Post-legalisation, it is not just fear—I think you get a balance of stories coming through—but it is something that you need to attend to.
Kim Leadbeater
Q
Professor Preston: We have heard lots of evidence about training schemes around the world. To be honest, I think they are still developing, but we can look at the good elements of those and at what has and has not been evaluated. We can do it almost like action research, where you are learning as you go, and we can improve the training as we go.
Most people do not die under palliative care. This Bill will affect general care; it will affect specialist care, but not in palliative care. We need to train those people as well, because they will be having a lot of these conversations. We are doing that training now, which is about how we talk to someone in a compassionate way. How do you help people to understand that they can be involved in the decision making? What might the goals of care for you be, and what might a goals-of-care conversation look like?
We have lots of this training already. Palliative care has huge expertise in this with advanced care planning and the rest of it, so it is about getting some of that incorporated. It is not just about saying, “This is what an assisted death would look like. This is how it would process.” It must be more than that, and we need to help people to explore their end-of-life choices. How do you want to die? Do you want to die at home? Do you want the cat on the bed? It is about all those things that are really important to people, but we must have that conversation and explore them, and it is quite hard to get clinicians to have those conversations. There will be a special group of people who can manage this; they will need training and support.
The Chair
I thank the witnesses on behalf of the Committee. We will suspend until 3 pm, which gives us six minutes.
Dr Opher
And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option?
Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.”
He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”
Kim Leadbeater
Q
Liz and Julie, I am interested to know whether you think any aspects of the processes that you went through in Australia and in Spain could have been done better or improved. Is there anything from your experiences that we could learn from to enhance what we are trying to do here?
I also have a question for all three of you—and Pat, goodness me, to come here and tell your story after everything you have been through is unbelievably brave, so thank you. What impact did these different types of death have on your grief and on bereavement? We are talking about different types of death, so I think it will be helpful to think what that looks like for people.
Julie Thienpont: It is a very good question, because I think it did impact my grief. There is not anything that I would change, for definite, about that, but I think I mentioned that I had not tried to talk Guy out of it the first time around, but I did say, “Don’t be so hasty, because you’re not as sick as you could be.” He was still getting up and dressed every day and managing pain, so we had that discussion. On the only day that I ever knew him to stay in bed a little bit longer, I knew he was thinking about phoning to say that he was ready, and he called me to him and said, “Come and sit with me. I want to ask you two things.” The main one relevant to this is: “Don’t try and talk me out of it this time. I’ve made the decision. Don’t try and talk me out of it, because I don’t want you to be impacted in that way.” The second one was to “be strong”.
Both those things have impacted my grief, because I was so strong for 12 whole months and I just thought, “Yes, we’ve gone through that. It’s been great, and”—not “great”. Sorry, I am using the wrong terminology, but for me, it was so good to know that he died so peacefully and he was at peace with himself. That happened and I thought, “Right, now I’ve got to do the ‘be strong’ bit,” so I did that. I did want to talk him out of it again, but I did not, and I was very strong, and then all of a sudden, one day, grief did start to creep in, obviously. Suddenly I thought, “Hang on, he’s not coming back.” That is a normal grieving process, but it held off a little while.
The pathway that the grief I experienced took was that every day I had a different memory of us sitting somewhere, being somewhere or doing something. During the last months that we had together, knowing that he was going to die—sorry to sound like a bit of a romantic—our love intensified so much. You know that everything you do, it is probably going to be the last time you do it. It is almost like an unbreakable bond between you: you are both in this situation together and you are going to get through it, you are going to be strong, and you are going to be there for each other. I think that carried me so far, because those four months that he lived were the best four months, in the sense of our closeness and how supportive and caring we were for each other. It makes me smile now. When I think of his passing, I smile. Yes, I do get upset and I miss him a big lot, but I smile because everything worked out the way he wanted it to.
Kim Leadbeater
Thank you so much.
Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.
We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.
When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.
Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.
I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”
The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.
Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.
In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.
The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.
Sarah Olney (Richmond Park) (LD)
Q
Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.
Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.
Kit Malthouse
Q
Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.
Kim Leadbeater
Q
Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?
Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.
Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.
I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.
The Chair
May I offer all three of you the collective condolences of everybody on the Committee? I thank you for your bravery in attending today and for speaking to us. Thank you very much.
Kim Leadbeater
Q
My question relates to point 15 in your written evidence, around the Human Tissue Authority. This is a model I looked at in terms of the decision making on coercion and capacity around people involved in organ donation. Can you tell me a little about that, and whether you think that there are parallels? It is a very serious decision, so we are in that territory. This is about what that looks like and what the role of psychiatrists is. We have talked a little about this already, but if we were to take this multidisciplinary approach, which I think is really powerful, what should the role of psychiatrists be?
Dr Price: On the role of an oversight group, one of the risks with individual practitioners doing these sorts of assessments is that they may do it once or twice in their career. What we know is likely to happen is that a smaller number of practitioners will do lots of assessments and build up individual expertise. However, it might be that a particular practitioner does this only for a patient who they know, or only a few times. Therefore, in terms of building up through repetition the sort of expertise that somebody such as me might have in the mental healthcare of an older person—thousands of patients over a couple of decades—an external group that understands the standards and the process should be able to scrutinise things at the time.
There are a number of bodies that do that not just for organ donation, but across lots of different services. We have them for liaison psychiatry, and they might have them for electroconvulsive therapy services, for example. They are not extraordinary or unusual, but they ensure that there is some consistency and reliability and that the assessments are of a standard. Scrutinising assessments after somebody has completed the process is useful for everybody who comes afterwards; it may not ensure that the quality was there for that individual. That would be the rationale for that sort of approach. Forgive me, but would you ask me the second part of your question again?
Kim Leadbeater
Q
Dr Price: I do not have lots of individual experience with that group, because I do not work within a specific service. But it is an example of a model that is in operation, and hopefully I have described the sorts of characteristics and why they are there.
Dr Shastri-Hurst
Q
Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.
In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.
Kim Leadbeater
Q
On capacity, just to reflect on the previous panel, my view is that psychiatric assessment would not be necessary in every case. We have heard from three families this afternoon; we can probably all agree that there was a clear wish from those individuals that this was the choice they wanted to make. I agree with the colleague who said that there will be a percentage of people; that is why I think referral to a psychiatrist is important in those cases. Have you any more thoughts on that, Dr Mulholland?
Dr Mulholland: As GPs, yes, holistic care is what we do—whole-person, biopsychosocial care. If we got into an end-of-life discussion with a patient and they expressed a wish to go through a route of assisted dying, should that be legal, that might still be part of a discussion that we would have with them. It is the active part of the process. The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.
We would not want to be out of the patient’s life. It is very difficult to be out of a patient’s life, but it may be that we are not part of that particular aspect of their care. It is the same when we refer to surgeons and hospitals; they have an episode of care elsewhere. This would be another episode that someone might be undertaking for that person. We will still have the families that we are part of; we will still be caring for them as well. We do not see them leaving general practice or general practitioners, but the assisted dying part of their health journey, or death journey, would perhaps be outside some people’s experience or expertise. You would need experts and people trained in it to be doing it, and not necessarily every GP.
Dr Price: No matter what somebody’s reason is for entering the process or what the outcome is, we are very clear that anybody should be able to access really good evidence-based care so that this should not in any way derail, deflect or make people not think about really good care. People should get really thorough assessments, have the right professionals involved in their care and have treatment where they need it and would benefit from it. All the quality that we have and all the guidelines that we work to should still be adhered to. We should still be providing all of the other good-quality care that we can. It is important not to bypass that and not to take shortcuts because they have made that decision.
The Chair
There are three people left who want to ask questions, so can I beg for brevity?
Terminally Ill Adults (End of Life) Bill (Sixth sitting)
Kim Leadbeater ExcerptsThursday 30th January 2025
(1 year, 6 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 30 January 2025 - (30 Jan 2025)
Jack Abbott (Ipswich) (Lab/Co-op)
Q
Alex Greenwich: Thank you very much for your question. At the outset, I will just stress that every jurisdiction should legislate the form of voluntary assisted dying that is appropriate to them. In New South Wales, that was six months for a terminal illness, or 12 months if that terminal illness was a neurodegenerative disorder. We had learned from the other schemes in Australia that that was going to be important because of the decline that occurs in neurodegenerative disorders like motor neurone disease, for example. It was because of that that we went down that path.
Professor Blake: I should add that in Queensland, there is no such distinction in life expectation between other diseases and neurodegenerative diseases. Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses. The Queensland Parliament took a different approach to address that particular feedback.
Dr Furst: From South Australia’s perspective, we are similar to New South Wales; we have less than six months for all conditions bar neurodegenerative conditions, which is less than 12 months. As a clinician, personally, I think that 12 months for neurodegenerative conditions is really helpful, because—as you have heard—if you are looking at prognosis and trajectories, with things like cancer, a patient will be going along and then often have quite a steep and rapid decline. That six-month prognosis is quite noticeable, but for patients with conditions like motor neurone disease, their decline can be slow and very distressing to them. Also, when trying to balance the prognosis along with getting them through the process, 12 months is really helpful, so if there was any chance, I would be strongly advocating for that.
Kim Leadbeater (Spen Valley) (Lab)
Q
It is really valuable for us as a Committee to hear your reflections on the experience of the process of passing this legislation. How did you manage to keep that process patient-centred but also take into account the concerns around the broader societal issues, particularly when it comes to equality and human rights—those really important issues? What was that process like, and what are your reflections on it? Also, Dr Furst and Professor Blake, one thing that I feel really strongly about is having really good training around assisted dying, and end-of-life care and choice. Would you like to make any comments on what that looks like?
Alex Greenwich: Thank you very much for that question. I will take you through a little bit of the journey to voluntary assisted dying in New South Wales, what encouraged action, and then the safeguards that we put in place.
The New South Wales coroner had reported to us that there were a number of really horrible suicides of people with terminal illnesses who felt they had no option—that those were cruel and lonely suicides. That was backed up by paramedics and police who would arrive on site. Myself and my parliamentary colleagues decided, “We can do better, and we can regulate in this space.” Voluntary assisted dying in New South Wales is an important form of suicide prevention. What voluntary assisted dying does, in the model that we legislated, is ensure that a person who has a terminal illness and knows that it is going to be a cruel and painful end of their life is instead directed to a doctor—a doctor who will be able to take them through all of their palliative care options, provide and link them with social supports, and give them the choice to have a death that is better than their illness would otherwise provide.
It has been important to make sure that our legislation is limited to that cohort of people who are terminally ill and know they will have a cruel end of life. Our legislation is not about people with anorexia nervosa. It is not about people with a disability. It is not about people who are feeling a burden. It is about a very limited and narrow cohort of people who know that they are going to have a very cruel and painful end of their life, and want that control to know that they can have a death that is better than what their illness would otherwise provide.
We have ensured that decision-making capacity needs to be enduring. We have ensured that a person cannot be under any form of coercion. We ensured that we had a really strong period of implementation, from the time the Bill was passed to 18 months later, when it came into effect, to make sure that our health system and the various doctors required training.
In New South Wales, the experience of voluntary assisted dying is that it has been a form of suicide prevention, and that it has also been, as I explained earlier, very pro-palliative care. As I reflect on our parliamentary debate, it was also one of the first times that our Parliament had grappled with the concept of death. We were very honest about it, and we were very honest in having to admit that we are all going to die, that there are some people with some terminal illnesses who are going to die in a really cruel and painful way, and that we could provide them with an option of control, peace and respect. We believe, and our annual reports into our legislation indicate, that we have been able to provide that. I am happy to answer any further questions, but I will wrap up on that.
Professor Blake: Given that the Western Australia legislation has been in force rather longer than the other jurisdictions that have been talked about today, we have had the opportunity to reflect upon it—I am speaking here as a lawyer; I assume that is why I have been invited to talk—and that has revealed some of the very good things about the working of the legislation, but also some of the challenges that have emerged.
As Dr Furst has said, the legislation in all Australian jurisdictions varies slightly, but it follows a particular legislative model, and is highly prescriptive. It requires a number of requests and, in Western Australia, assessment by two different practitioners. In Western Australia, there is no judicial double-checking of that process. Although I note that that is contemplated within the UK law, that is not something that we have found to be necessary or even appropriate in Western Australia, and I think that would be the case in other Australian jurisdictions.
One of the issues we have experienced is that there is a struggle to get people to take up the training, whether that be medical practitioners or nurse practitioners. One of the thoughts around that has been the very prescriptive nature of the model, which requires a lot of work on the part of the practitioners. It is worth bearing in mind when looking at your piece of legislation that the more prescriptive it is, the more work it requires on the part of practitioners, and that is a lot of work. We need those people to undergo the training in order that the process is done properly and all the safeguards that are included within the legislation—and they are extensive—are respected. That is something to bear in mind.
We have prescriptive provisions around capacity and voluntariness and lack of coercion. I would add that we also have a requirement around residency. If we are looking at when the legislation has come before a tribunal or judicial body, the only circumstance—in Western Australia, at least—where it has come before the tribunal, which is the State Administrative Tribunal, has been where the practitioner has regarded the patient as not eligible on the grounds of not fulfilling the residency requirements. There has been no other ground on which a matter has been taken to a judicial body.
You asked about the training. That is an essential requirement for practitioners who are involved in making assessments and in the whole process. It is intrinsic to the operation of the Act. The feedback I have heard is aligned with what Dr Furst has said—that no divisions have arisen within the practitioners here, and that those who have chosen to do the training are indeed very valued and very much appreciated by the people who have accessed the scheme.
I will say two more things about the regulation. One is that in the report that has been handed down, the only negative feedback has been about delays. That has been identified as being due to a lack of education among health professionals. One of the recommendations of the report is that education really needs to increase so that people’s journey on VAD is not unnecessarily delayed and, perhaps, their wishes are not able to be granted.
The second thing is on conscientious objectors: 13.7% of applications for VAD in Western Australia from 2023 to 2024 were declined on the basis of conscientious objection. But in Western Australia, unlike some other Australian jurisdictions, if a practitioner declines to become involved in the process, they are required by law to give the patient an information sheet outlining options around voluntary assisted dying. That is actually mandated in the legislation.
I have probably said enough for now, so I will hand over to Chloe.
Dr Furst: I completely agree with Meredith that the training is fundamental. For most jurisdictions, it probably takes a full day. It is often an in-person event followed by an exam, which you have to pass. In South Australia, we had a whole lot of mandatory questions that you actually had to pass to be eligible, to make sure that you were upholding the legislation.
This is so different from anything else in medicine. In any other part of medicine that I practise, if I see a process that I think can be improved—if I see efficiencies that can be made or bits of the system that are not adding to patient care—I can choose to adapt the process as I see fit to give the patient the care that I want to give or that is compatible with what the patient wishes. That is so different from voluntary assisted dying, where, as Meredith said, it is so legislated, down to who can be a witness for various documents. As a doctor, the amount of documentation that is required for voluntary assisted dying is second to nothing. We just do not do that kind of documentation in any other areas of medicine. So it is quite different, and it really does require being quite precise around that documentation and making sure that you are meeting all the timeframes and guidelines. The training is hugely important in terms of the operational component.
There is also the training around end of life and conversations, and how you support the patient and the families. That is a lot harder to teach. That is, I guess, why people will fall into this, and why a large number of palliative care doctors will do it—because it is already second nature to them or they already have the relationship with the patient and they see these conversations as something they are good at and good at facilitating.
So there are two parts of that training that are really important, and then, as Meredith said, there is also the training we need to be giving to the rest of our workforce, and really all health practitioners. A patient might ask the social worker, the orderly or the dietician about assisted dying, and they have to know how they can respond and how they can connect that individual to the right practitioner. That is really important. We have done a lot of work in South Australia, as all the other jurisdictions have, around upskilling the whole workforce, because this is everyone’s role and job.
I also wanted to speak briefly on what we in South Australia call the gag clause. In South Australia and Victoria, we are not allowed to bring up voluntary assisted dying with patients, and that is really, really problematic. From my perspective, it leads to poor provision of care. In medicine, when I am talking to a patient, in every other area, if they needed treatment, I would be obliged, and it would be good practice, to tell them about all the treatment options that are available to them. If someone had cancer, I would want to be telling them about good palliative care, potentially surgery, and radiotherapy and chemotherapy, yet voluntary assisted dying is the one thing we are not allowed to talk about and is taken off the menu. Some people may not know that voluntary assisted dying is available to them. They might be waiting for me as the doctor to bring it up to them. I have brought up every other option for them; why am I not able to talk about voluntary assisted dying? I just think it is really important that we do not stigmatise voluntary assisted dying and that we see it as a valid option for people.
Professor Blake: To add to what Chloe said, in Western Australia practitioners can raise voluntary assisted dying as long as it is in association with other end-of-life choices, but the way the legislation is worded is confusing, so one of the recommendations in the most recent report is that that be removed altogether so that voluntary assisted dying is treated like any other treatment option. As Chloe indicated, the evidence was that treating voluntary assisted dying differently can compromise the whole end-of-life journey, because it interferes with discussion of other end-of-life options. The strong recommendation from the board is that it be removed altogether and that voluntary assisted dying be treated just like any other appropriate treatment option so that the patient has a true choice.
Terminally Ill Adults (End of Life) Bill (Seventh sitting)
Kim Leadbeater ExcerptsThursday 30th January 2025
(1 year, 6 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 30 January 2025 - (30 Jan 2025)
Dr Opher
It was clause 26, sorry.
Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted.
There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents.
The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential.
The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests.
Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision.
On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.
Kim Leadbeater (Spen Valley) (Lab)
Q
I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?
Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.
I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.
You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.
I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.
Danny Kruger
Q
Professor Hoyano said that the person in the street would not see the difference between a patient requesting to die by the withdrawal of treatment versus the active administration of fatal drugs, whereas I think you said, Professor Owen, that you did see a profound difference between that decision on the part of the patient and also, presumably, the act on the part of the medical professional, in the case of either the withdrawal of treatment or the administration of fatal medication. You said that you would be happy to draw that out; could you do so?
Professor Owen: Yes. I am happy to try now, but also to do it further with some written submissions if that would be helpful, because it is such an important point. First, for the man on the street, or the person on the bus, one thing to remember—this comes out in the public opinion polling—is that when you ask about assisted dying, some people think that that is access to palliative care. There is a degree of misconceptions that are out there in the public that are important to bear in mind.
On the distinction between the decision around the refusal of life-sustaining treatment and the decision regarding assisted dying, what are the similarities? Well, they are both about life and death. What are the differences? One is a refusal; one is a request. One is traditionally considered to be about bodily integrity—it is the so-called shield of the person, or the patient, against the intervention on the body that is being made by the medical profession. You are giving the patient an important right, which is a shield-like right. That contrasts with a request for assisted dying, which is a request. You are involving other people in an act that is an act of ending one’s life. That is not something that the medical profession has been comfortable with, going back thousands of years.
So you can discern a number of differences. Could you reduce those differences to one thing and one thing only, and be particularly precise about it? Probably not. I think you are talking about differences that cluster and group, and which we overall accept as a difference of kind.
The other issue here that is important is intention. When you are assessing somebody’s decision to refuse a life-sustaining treatment, the doctor there does not have the intention to end a person’s life. That would be a concerning intention were it there—and sometimes it is looked for, actually, if it is disputed. But of course, when a doctor is involved with a process where somebody is seeking assistance in the ending of their life, it is quite difficult to say that the doctor does not have an intention to end life.
One could go on with a discussion of the differences, but the similarity is that we are talking about life and death.
Kim Leadbeater
Q
Let me come back to the content of the Bill, and to some of your points, Professor Owen. In terms of capacity and coercion, I think we are absolutely having these really important conversations. What concerns me a little bit, though, is whether we are saying we are not confident that two doctors, potentially a psychiatrist and an oncologist, and a judge can make assessments of capacity and coercion between them. What does that mean for things that are happening at the moment? We have talked about the withdrawal of end of life treatment and those things; those assessments must be being done now, all the time, but at the moment there is no legal framework around that. Surely, putting a legal framework around that and having all those multidisciplinary people involved has got to be a positive thing. Professor Hoyano, I would appreciate your thoughts on that.
Professor Hoyano: As I say, whereas I completely respect Professor Owen’s expertise in this as a psychiatrist, for me as a lawyer the question of capacity is a yes or no, necessarily. But capacity is always determined by the Court of Protection in respect of the decision that must be made by the person concerned: do they have the capacity to do it?
When we are talking about a determination of capacity, and also about coercion—which of course is part of capacity in a sense, because capacity is the autonomy of decision making—you are going to be having a very focused inquiry. It is not an inquiry into whether a person has capacity to manage their financial affairs. I probably do not have that capacity, but on something like this I would have capacity. It is important to recognise that it is a yes or no question, which the law has to draw and does draw, depending on the expertise of psychiatrists like Professor Owen, but also forming its own judgment from its own experience, which is why I think the Court of Protection really is the place where this should be.
There is one aspect of the Bill that worries me a lot, and that is the number of people who will be excluded by the provision that the medication must be self-administered. This would mean that Tony Nicklinson, who went all the way to the House of Lords to try to get the right to die, could not have it under this Bill, because he was paralysed. He was a tetraplegic, basically—he was paralysed from the neck down, with limited movement of his head, from a stroke. He lived for seven years with that condition and he would not have been able to self-administer. In fact, when he was denied by the House of Lords—anyone who has seen the Channel 4 programme will have watched him wail in despair—he refused all nutrition and hydration from that point until he died. That was the death he did not want, and I think we need to recognise that there are problems like that. In 2023 in Canada, across the entire country, only five patients opted to self-administer the medication—only five. Even when patients were capable of doing it, they wanted the doctor to do it instead, so let us remember that as well, please.
Dr Ward: Can I make a quick point about self-administration? This is something that in Scotland we looked into in great detail. In Scotland, we chose self-administration specifically because it does not just include ingestion or swallowing. There is a range of ways in which you can self-administer the medication, and I am happy to provide that information to the Committee if that would be helpful.
Lewis Atkinson
Q
Professor Owen: Good question. On the point about that interaction issue, it is not just me picking it up; it is the courts and the Court of Protection particularly. If you are interested, it is footnote (11) in the written submission from the Complex Life and Death Decisions group. The point that you make is well taken from my point of view. You have two doctors, essentially, doing the assessment. Some doctors can be very good at assessing social circumstances; some are not so good. I think it would be preferable to try to get a law that gets sight of social circumstances; one way of doing that may be to insert a requirement that a suitably experienced social worker is involved, so that there is some sensitivity to those contextual, relational, interpersonal effects, which, as I know you are aware, can be very subtle. A lot of these things are extremely difficult to pick up. They are easy to miss and, even when you are aware of them, there can be dilemmas about what to do with them.
Professor Hoyano: Might I add a postscript to that? A model that we could consider in this context is CAFCASS—the Children and Family Court Advisory and Support Service—in the family courts. It is a body of experts—civil servants, in effect—but they are independent and they are accustomed to dealing with specific context with social workers, for example. They investigate what should happen to a child in public law or private law proceedings. It occurs to me that something like that—a report from an equivalent body to the solicitor’s office, which I mentioned before—could be a very good way of building that in, because I completely agree that social workers are likely to be more professionally attuned, by virtue of their training and experience, to looking at the wider context.
Kim Leadbeater
Q
Professor Preston: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust.
One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.
Kim Leadbeater
That is really helpful.
Dr Richards: I do not think there is any evidence that there is a loss of trust in doctors post legalisation—I just wanted to add that.
As I said in response to the earlier question, this is a categorically new thing that would be coming into society, which would cause cultural change in how we approach, think about and anticipate dying. It is a big deal—I know you all know that. Accompanying it, therefore, there needs to be really sensitive information delivery that is appropriate across society and that will alert people to this. In particular, if you are going to have a system where doctors are not allowed to raise it with patients, people need to know about it. That is one thing.
Reducing people’s fears is also important. I mean, there are so many misconceptions about assisted dying, even among people who have spent quite a lot of time reading about it and researching it. It is a very simple thing, but the discourse in society has been going on for so long that there is a lot of misunderstanding.
Kim Leadbeater
Q
Dr Richards: Misunderstandings of what it is? Fundamentally, that it is not based on the principle of autonomy and that it is something that can be done to you, without your consent. You would not want the general public to think that. At a very basic level, it is understanding that assisted dying—the very phenomenon that that term encapsulates—is a phenomenon that starts with the patient. It is a request made by the patient because of their subjective assessment of their quality of life as they are dying. At a very fundamental level, you would want to communicate that to the public. It is a huge piece of work to have to create an informational context that is variegated according to the starting position of people’s knowledge base around it, and to bring in something that does not scare the public and so they see it as something that can be positive.
In jurisdictions that have legalised, even post-legalisation there continue to be elements that resist it. However, you start to see positive stories of the kind of ceremonial aspects that can come when you can time death. There is a whole cultural piece around new rites—new rites around dying that are being created when people choose to have an assisted death, and the new dying time or space that is opened up there, as well as the intentional actions that can happen from people’s social groups. Post-legalisation, it is not just fear—I think you get a balance of stories coming through—but it is something that you need to attend to.
Kim Leadbeater
Q
Professor Preston: We have heard lots of evidence about training schemes around the world. To be honest, I think they are still developing, but we can look at the good elements of those and at what has and has not been evaluated. We can do it almost like action research, where you are learning as you go, and we can improve the training as we go.
Most people do not die under palliative care. This Bill will affect general care; it will affect specialist care, but not in palliative care. We need to train those people as well, because they will be having a lot of these conversations. We are doing that training now, which is about how we talk to someone in a compassionate way. How do you help people to understand that they can be involved in the decision making? What might the goals of care for you be, and what might a goals-of-care conversation look like?
We have lots of this training already. Palliative care has huge expertise in this with advanced care planning and the rest of it, so it is about getting some of that incorporated. It is not just about saying, “This is what an assisted death would look like. This is how it would process.” It must be more than that, and we need to help people to explore their end-of-life choices. How do you want to die? Do you want to die at home? Do you want the cat on the bed? It is about all those things that are really important to people, but we must have that conversation and explore them, and it is quite hard to get clinicians to have those conversations. There will be a special group of people who can manage this; they will need training and support.
The Chair
I thank the witnesses on behalf of the Committee. We will suspend until 3 pm, which gives us six minutes.
Dr Opher
And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option?
Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.”
He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”
Kim Leadbeater
Q
Liz and Julie, I am interested to know whether you think any aspects of the processes that you went through in Australia and in Spain could have been done better or improved. Is there anything from your experiences that we could learn from to enhance what we are trying to do here?
I also have a question for all three of you—and Pat, goodness me, to come here and tell your story after everything you have been through is unbelievably brave, so thank you. What impact did these different types of death have on your grief and on bereavement? We are talking about different types of death, so I think it will be helpful to think what that looks like for people.
Julie Thienpont: It is a very good question, because I think it did impact my grief. There is not anything that I would change, for definite, about that, but I think I mentioned that I had not tried to talk Guy out of it the first time around, but I did say, “Don’t be so hasty, because you’re not as sick as you could be.” He was still getting up and dressed every day and managing pain, so we had that discussion. On the only day that I ever knew him to stay in bed a little bit longer, I knew he was thinking about phoning to say that he was ready, and he called me to him and said, “Come and sit with me. I want to ask you two things.” The main one relevant to this is: “Don’t try and talk me out of it this time. I’ve made the decision. Don’t try and talk me out of it, because I don’t want you to be impacted in that way.” The second one was to “be strong”.
Both those things have impacted my grief, because I was so strong for 12 whole months and I just thought, “Yes, we’ve gone through that. It’s been great, and”—not “great”. Sorry, I am using the wrong terminology, but for me, it was so good to know that he died so peacefully and he was at peace with himself. That happened and I thought, “Right, now I’ve got to do the ‘be strong’ bit,” so I did that. I did want to talk him out of it again, but I did not, and I was very strong, and then all of a sudden, one day, grief did start to creep in, obviously. Suddenly I thought, “Hang on, he’s not coming back.” That is a normal grieving process, but it held off a little while.
The pathway that the grief I experienced took was that every day I had a different memory of us sitting somewhere, being somewhere or doing something. During the last months that we had together, knowing that he was going to die—sorry to sound like a bit of a romantic—our love intensified so much. You know that everything you do, it is probably going to be the last time you do it. It is almost like an unbreakable bond between you: you are both in this situation together and you are going to get through it, you are going to be strong, and you are going to be there for each other. I think that carried me so far, because those four months that he lived were the best four months, in the sense of our closeness and how supportive and caring we were for each other. It makes me smile now. When I think of his passing, I smile. Yes, I do get upset and I miss him a big lot, but I smile because everything worked out the way he wanted it to.
Kim Leadbeater
Thank you so much.
Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.
We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.
When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.
Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.
I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”
The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.
Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.
In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.
The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.
Sarah Olney (Richmond Park) (LD)
Q
Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.
Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.
Kit Malthouse
Q
Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.
Kim Leadbeater
Q
Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?
Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.
Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.
I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.
The Chair
May I offer all three of you the collective condolences of everybody on the Committee? I thank you for your bravery in attending today and for speaking to us. Thank you very much.
Kim Leadbeater
Q
My question relates to point 15 in your written evidence, around the Human Tissue Authority. This is a model I looked at in terms of the decision making on coercion and capacity around people involved in organ donation. Can you tell me a little about that, and whether you think that there are parallels? It is a very serious decision, so we are in that territory. This is about what that looks like and what the role of psychiatrists is. We have talked a little about this already, but if we were to take this multidisciplinary approach, which I think is really powerful, what should the role of psychiatrists be?
Dr Price: On the role of an oversight group, one of the risks with individual practitioners doing these sorts of assessments is that they may do it once or twice in their career. What we know is likely to happen is that a smaller number of practitioners will do lots of assessments and build up individual expertise. However, it might be that a particular practitioner does this only for a patient who they know, or only a few times. Therefore, in terms of building up through repetition the sort of expertise that somebody such as me might have in the mental healthcare of an older person—thousands of patients over a couple of decades—an external group that understands the standards and the process should be able to scrutinise things at the time.
There are a number of bodies that do that not just for organ donation, but across lots of different services. We have them for liaison psychiatry, and they might have them for electroconvulsive therapy services, for example. They are not extraordinary or unusual, but they ensure that there is some consistency and reliability and that the assessments are of a standard. Scrutinising assessments after somebody has completed the process is useful for everybody who comes afterwards; it may not ensure that the quality was there for that individual. That would be the rationale for that sort of approach. Forgive me, but would you ask me the second part of your question again?
Kim Leadbeater
Q
Dr Price: I do not have lots of individual experience with that group, because I do not work within a specific service. But it is an example of a model that is in operation, and hopefully I have described the sorts of characteristics and why they are there.
Dr Shastri-Hurst
Q
Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.
In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.
Kim Leadbeater
Q
On capacity, just to reflect on the previous panel, my view is that psychiatric assessment would not be necessary in every case. We have heard from three families this afternoon; we can probably all agree that there was a clear wish from those individuals that this was the choice they wanted to make. I agree with the colleague who said that there will be a percentage of people; that is why I think referral to a psychiatrist is important in those cases. Have you any more thoughts on that, Dr Mulholland?
Dr Mulholland: As GPs, yes, holistic care is what we do—whole-person, biopsychosocial care. If we got into an end-of-life discussion with a patient and they expressed a wish to go through a route of assisted dying, should that be legal, that might still be part of a discussion that we would have with them. It is the active part of the process. The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.
We would not want to be out of the patient’s life. It is very difficult to be out of a patient’s life, but it may be that we are not part of that particular aspect of their care. It is the same when we refer to surgeons and hospitals; they have an episode of care elsewhere. This would be another episode that someone might be undertaking for that person. We will still have the families that we are part of; we will still be caring for them as well. We do not see them leaving general practice or general practitioners, but the assisted dying part of their health journey, or death journey, would perhaps be outside some people’s experience or expertise. You would need experts and people trained in it to be doing it, and not necessarily every GP.
Dr Price: No matter what somebody’s reason is for entering the process or what the outcome is, we are very clear that anybody should be able to access really good evidence-based care so that this should not in any way derail, deflect or make people not think about really good care. People should get really thorough assessments, have the right professionals involved in their care and have treatment where they need it and would benefit from it. All the quality that we have and all the guidelines that we work to should still be adhered to. We should still be providing all of the other good-quality care that we can. It is important not to bypass that and not to take shortcuts because they have made that decision.
The Chair
There are three people left who want to ask questions, so can I beg for brevity?
Terminally Ill Adults (End of Life) Bill (Fifth sitting)
Kim Leadbeater ExcerptsWednesday 29th January 2025
(1 year, 6 months ago)
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Lewis Atkinson
Yes, I am asking whether that is the case.
Professor House: I think the problem with this Bill is what assessment it expects to be made that does not cover the ground that I have been talking about. It just asks, “Is this person able to make decisions?” Essentially, that is what the assessment boils down to, and it does not cover the psychological and social assessment. What I am suggesting is not a terribly radical thing—it is in the guidelines from the National Institute for Health and Care Excellence, in other clinical circumstances where we come across people who say they want to end their life. NICE guidelines say that we should undertake a psychological social assessment.
Richard Robinson: We as an organisation are calling for the need, in a safer ageing society, to foster an environment where the safety and dignity of ageing individuals is guaranteed. We have seen some horrific examples, such as in covid with DNRs, and I think there are some parallels to be drawn there. We want to see as much robust safeguarding and checking in place as possible to ensure that that kind of issue does not come to the fore.
Kim Leadbeater (Spen Valley) (Lab)
Q
Also, Richard, I would love to know your thoughts. I hear what you are saying about protections for older people, but as you rightly said, it is fair to say that not all older people are vulnerable, and that a lot of older people support a change in the law. Also, not all older people are terminally ill—I think about my grandad, who asked me to take him to Switzerland. I have thought about him a lot in recent months, but he would not have been covered by the Bill because he was not terminally ill; he was just old. Those are just a couple of observations, which you can come back on if you wish.
Professor Esmail, you acknowledged that during your time as a GP, you went on your own journey on assisted dying. I think you described yourself as being implacably opposed, but you also stated that the law at the moment is a mess and does not protect anyone. Can you tell us a little about that journey and how you came to that conclusion?
Professor Esmail: With the Shipman inquiry, I realised that there were real gaps in the process. Dame Janet Smith put in many safeguards about end-of-life care. But it became apparent to me that in terms of choice, we did not have any safeguards.
My own experience was of looking after someone who had a terrible cancer of the mouth and had pleaded with me before. He declined surgery; he said that he knew what he was going to do, that he would say his goodbyes and everything else, and that at some point he wanted to end his own life. He asked if I could help him to do that. Of course I could not, and explained why. I promised him that I would do as much as I could to alleviate his suffering. It is very graphic—it is awful. You basically choke; you cannot swallow; this thing just grows into your mouth and so on. I asked myself, “What am I achieving?” He was going to die—he knew that he was going to die. I asked myself, “Am I achieving anything by just saying, ‘No, you’ve just got to go through this process, because there is something about suffering that everyone has to go through, and it is part of life’?” I just said to myself, “This is wrong.”
When I investigated it more, I realised that you see this: people make the choice about going to Dignitas. As a doctor, they would come to me sometimes and say, “Can you fill in my medical form?” That put me in a very difficult position. Actually, it is against the law to do that because I am assisting someone. The Director of Public Prosecutions has said that they will not always prosecute people, but nothing is clear about this. We know from surveys that Dignity in Dying has done that something like 600 people take their own lives because they don’t want to go through the suffering. But it is all behind closed doors, in sometimes very violent ways. When you look at things like that, you say, “How is the law protecting anyone at the moment?” I have come to the conclusion that we don’t have a legal framework, and because of my research on patients I would say that it is actually very unsafe. So, paradoxically, a law that talks about these things, which produces safeguards, is a huge improvement on where we are at the moment. That is the first point.
The second point I would make is that, as the Committee has talked about, there are already complex decisions. We make them all the time. We assess capacity. If someone comes to us and says, “I want to do a lasting power of attorney,” you need to assess capacity. When a relative says to you, “I have lasting power of attorney; I can speak on behalf of my mother”—or whatever else—you say, “No—I still want to speak to your mother.” There are many areas where the law is quite well defined in that respect. So, we are already doing that.
There are very grey areas where people take the decision to refuse treatment. I think it is very difficult. We seem to be happy to be saying, “All right, we will support you, but you agree not to take any food and water and you will dehydrate to death,” or if someone has end-stage motor neurone disease and says, “I want you to pull my tube out,” to say, “We will sedate you while we do that.” So, these things happen already. And from my understanding, the law will bring a clear legal framework for doing that. And actually, I think it will protect doctors and patients in the decisions they make. That is why I think we have to move now.
We have put in some safeguards. Many doctors are very good at assessing this—in terms of mental capacity, for example. We are doing it all the time. It is an integral part of our training. I am not saying it is perfect. I take the points about coercion, and it is difficult. But again, we are becoming more aware of this as a society. Typically, as GPs, we are given training about trying to identify domestic abuse, how to deal with that and so on. I think things are improving. I am not saying that there is no coercion; we don’t know. The point is that at the moment, we have no monitoring. If we have a legal framework, we will know how many people have chosen assisted death; we will know that they have gone through a process—we will know all these things. It just makes it much more clear and open for everyone. I think it will make the quality of the conversations we have with dying people even better as well. There are many, many reasons why I came to that conclusion when I thought about it.
Kim Leadbeater
That is really helpful. Dr Mullock, do you want to add anything?
Dr Mullock: I agree with most of the things that I am aware of that Professor Esmail just talked about. I would add that at the moment, people go sooner than they would wish to die because they have to go to Switzerland while they are still well enough to travel. They also have this terrible fear that their loved ones will be prosecuted by the police, which creates huge amounts of stress and is really unpleasant. I agree that having a system of prospective assessment of the person, rather than retrospective—when it is too late after they have died—will absolutely be a better and more compassionate approach, and provide better safeguards than we have at the moment.
Jake Richards (Rother Valley) (Lab)
Q
Professor House: No, these things depend on the circumstances. If somebody says, “I’ve had enough of this. I’ve had chemotherapy and I don’t want any more,” they would not be subject to that, unless it was such a sudden change in the context of other changes in the person that the oncologist treating them thought something needed further explanation; it would not be terribly common, no.
Lewis Atkinson
Q
Baroness Falkner: For clarity, a socioeconomic duty has not been incorporated. It is the current Government’s intention to incorporate that part of the Equality Act, but it has not been incorporated so we are not looking at it through that specific prism. But you make a very valid point because inequalities in healthcare, housing and all the associated factors that play into good health and wellbeing are there, and they exist palpably—even across geographical parts, from one bit of an area to another. They play actively into it.
Ms Hadi will be able to give better testimony than I could on this but, from what one understands, GP provision and general access to healthcare are poorer where demographics are poorer than it is in the better performing parts of the country. One other factor to consider in terms of a postcode lottery is that people in wealthier parts of the country tend to be more highly represented in private healthcare than in public healthcare and use of the NHS. That also impacts their choices and the care they get.
Fazilet Hadi: On health inequality, I take your point about how some of us can afford to fly off to Switzerland and some cannot, but some of us live in boroughs where we will die 10 years earlier and some of us have learning disabilities and might die 27 years earlier. I know you are looking at clauses, but this Bill will go into the real world, and that is what is happening in the real world—people are not getting social care and not getting palliative care. They are dying earlier. More poor people will die earlier and more poor people will have fewer options, fewer choices, less nice homes and fewer facilities to support them. As Baroness Falkner said earlier, they will unfortunately have insufficient social care and palliative care. When we are looking at inequalities, we need to note that this Bill is going to be plunged into a society that has deep, entrenched health inequalities that do not play out well for people who are poorer.
Kim Leadbeater
Q
The Chair
Order. I think it is best if we ask questions of the witnesses. As I said, the Committee—you, not me—has allocated an hour to this, and I want to make sure every Member gets an opportunity to speak. We only have 20 minutes left, with five or six people to go.
Kim Leadbeater
It will be a question. The Bill is very clear, in clause 2(3), that disabled people are not within its scope, but I would be really interested to know if there is anything you think we could add to make that clearer—I put that to Fazilet, too—because I want to be really clear about that, and I want to provide any reassurance that I can.
My main question is to Lord Sumption. You acknowledge the importance of autonomy and dignity at the end of life, and indeed article 8 of the European convention on human rights talks about bodily autonomy and self-determination. I would be interested to know how you came to that conclusion on the issue of assisted dying. You also described the Bill as over-engineered, bureaucratic and impersonal—thank you for that. Would you agree with the chief medical officer, then, that we should avoid making the choice of assisted dying a “bureaucratic thicket” and keep the safeguards robust but simple? If so, what do you think that could look like?
Lord Sumption: I do agree with that. The chief medical officer, at least in the extract from his evidence that I saw, was not very specific about how the thicket could be loosened a bit. I have made one suggestion that I think would make a significant difference, which is the removal of the clause 12 stage. That is the principal point. The medical input from the two referee doctors is an important but private and informal process, whereas the proceedings of a court are extremely public and formal, and also productive of a very considerable delay. That would make a considerable difference in the direction that you have been talking about.
Kim Leadbeater
Q
Baroness Falkner: Can I just pick up the point about section 6 of the Equality Act 2010? That is clear, but it was not written with the intention of applying in these circumstances; it is a very narrow definition of disability. Excluding disabled people in that sense is a good thing and we support that, but it does not go far enough in our view.
Fazilet Hadi: I do not know how you can exclude disabled people, because there is a huge overlap between disabled people and people who will at some point become terminally ill. I find that challenging. I do not think that separation can happen in the letter of the Bill. There will be disabled people who are also terminally ill people.
On the wider point about what that will mean for other disabled people, who this Bill does not cover at all, I agree that the Bill is trying to circumscribe what it covers, but in the real world is it very likely that it will not have implications for the way people, doctors and health authorities think about disabled lives? I understand that the Bill’s drafters do not have that intention, but again, in the real world, where disabled people already face challenges in their lives being valued, we will come across that shift in culture more widely than this Bill wants to happen.
Kim Leadbeater
Q
Fazilet Hadi: I think when it comes down to individuals, as I say, you are not going to be able to work out whether someone is disabled, terminally ill, black—people have so many identities. The issue for us, and the reason we are opposed to it, is not that we do not think that what is happening to people at the end of their lives is difficult—of course it is. But we took the view that we are trying to create a society where disabled people are equal and valued, and in that sense the Bill actually makes it harder for us to reach a disability-inclusive society. We come at it from that view. As parliamentarians, I know you want to look at the problems of individuals, but you also have a responsibility to think about the society we want to create. I and other disabled people feel that we already have an uphill struggle convincing people that our lives are of equal value, and this Bill hinders us in that aspiration and ambition, rather than helping us.
Jake Richards
Q
Dr Graham: I am afraid my answer will be quite short.
Kim Leadbeater
On a point of order, Mr Dowd. I am slightly concerned that we are having a conversation about the process, rather than about the actual Bill. I am not sure whether that is in scope of the work of the Committee.
The Chair
I am allowing latitude to tease the matters out, but I am sure that the witnesses have heard what you have to say.
Baroness Falkner: I will briefly conclude. Any bit of additional analysis is welcome, but quite a lot of additional analysis needs to be done, and we would welcome that.
Fazilet Hadi: Disabled people are not a homogenous group. Just like the general population, disabled people will have all sorts of views. Probably some will be very informed about this debate, and others will not be. Our position as Disability Rights UK and the disabled people’s movement is not about counting how many people are supportive or not supportive; it is much more about the knowledge and evidence that we have about how society works, how discrimination works, how equality works, and the barriers that we face.
I take the point that you are looking at the clauses of the Bill, but you were testing the real-world implementation and implications of the Bill when I was listening to the earlier session. I will just say some of the things that are in the real world at the moment, and these have been mentioned: insufficient social care and healthcare; insufficient palliative care; rampant and worsening health inequalities; disability discrimination, and the devaluing of disabled lives. We only have to go back five years, to the covid pandemic, to see how disabled lives were devalued. We all know about the “Do not attempt resuscitation” notices. We all know that disabled people sometimes did not receive access to critical care. We all know that young people with learning disabilities were disproportionately dying. I really think the real-world implications always have to be tested. This Bill is not an abstract exercise; it will land in a society that is rife with inequality.
Jack Abbott
Q
Sam Royston: We are neutral on the question of whether assisted dying should be introduced. We are not neutral on the question of whether palliative care should be improved.
Kim Leadbeater
Q
Dr Neerkin, on that point, yesterday we heard a range of views from palliative care professionals, and there are a range of views within the sector around assisted dying. Could you tell us a bit about your views as a result of your more than 25 years of experience as a consultant physician in palliative medicine?
Dr Neerkin: First of all, death and dying is not owned by palliative care. We are hearing a lot about palliative care, but we have also heard from GPs that they deal with a lot of death and dying, as does every other speciality. So first of all, we do not own death and dying. I think a lot is being put on palliative care, and palliative care is not a panacea for everything at the end of life. This is multifactorial; it is about good medical care, good social care, good care in the community and everything that can be provided for people of all backgrounds and all abilities and disabilities. I think that is really important to begin with.
I am very lucky to work in a trust that has a huge amount of backup for palliative care, interventional pain control and psychology. We have great backup to provide great end of life care, which is not available all across the country. Despite that, there is still a need for assisted dying, because that does not answer every single question. What I have seen over the years is that people want some control when they lose all other control and they do not feel dignified. It is not just about being a burden; they do not want their loved ones to see them suffering and to lose all dignity in front of their loved ones, as they are doing. As we see in other countries, people want to have that choice. It does not necessarily mean they will take it up in the end, but to know that they can choose assisted dying is incredibly important to them, and it gives them advocacy and a bit of autonomy and control where they lose control.
Those are the questions that are brought to me when people say, “Can you not just hasten this death?” People just want to have the conversation around it. Even if I were to say to them, “If I had a tablet here and now that I could give you, would you take it?” probably eight out of 10 times people would say no, because inherently people have a will to live. We are talking very much about dying and people wanting to die, but most people I treat and most families really want their loved one to live. It is just about being able to have the choice and feeling that, if things become unbearable for them, or they feel they have lost all dignity and all control in a situation, they have got a bit of control left.
Kim Leadbeater
Q
Dr Hussain: That is a really important point. Over-whelmingly, going into the communities I have worked with for a long time in Bradford, I have found that the big impact post covid is this big fear—fear that this will impact them, and fear that it will result in them not only not accessing our services and therefore having poorer deaths, but also not accessing other healthcare intervention. As I said, the people I spoke to identified a small number of people who would want it, but they were structurally disadvantaged. Again, we need that clarity. If people are structurally disadvantaged, and they are doing this because they cannot get culturally competent and trauma-informed mental health support and social support, do I offer them assisted dying or not? That is a really important issue. In terms of them having inequitable access, I am not actually against it, but the biggest impact I see in a UK context post covid is this massive fear that they have, and I am really worried about that. I want to offer better support to structurally disadvantaged people who want this.
Issues were also identified about the prognosis of people who want to go down this route. They are more likely to die of conditions that are harder to prognosticate, such as cardiac disease, which has a fluctuating trajectory. There were concerns about how families will be involved. Families are really important for decision making, and our research shows that they are the safeguard against discrimination, so we need to find a way for them to be involved. There were also worries about coercion and mental health. People brought that up to me spontaneously, saying that it was often missed in their communities or misunderstood by health and social care services.
Kim Leadbeater
Q
The Chair
Order. If people want to intervene, can they please do so through the Chair? Otherwise, we will get into chaos. Could you please finish answering the question?
Kim Leadbeater
Sorry.
Dr Hussain: I really liked what you said yesterday; we need gold standard training. The thought yesterday about what happens with capacity made me think straight away about cases in the last few months where we, as a palliative care team, thought that someone had capacity, and the other team did not. That happens all the time in palliative care; it is a really frail population, and it is really complex. The safeguards for assisted dying must be higher, so I like the idea of gold standard training and, crucially, gold standard implementation and evaluation.
I looked yesterday to see what the evidence is that capacity assessments are great and fine, and there was none. I tried to look at whether there are differences for different communities, but we have not even looked at that. However, we do know that people who are racialised as black are 3.5 times more likely to be detained under the Mental Health Act 1983, so the chances are that there are discrepancies there.
Similarly, with coercion, do we know if safeguarding training is absolutely fit for purpose? We all see stories in the newspapers every year in which people who have come in contact with healthcare professionals who have had this safeguarding training end up dying. It is not fit for purpose, and we need to have a gold standard.
Perhaps that will filter out and bring everyone else up, but, with my academic hat on, I would say that the implementation gap is the biggest thing. In palliative care, we have been trying for a long time to train up people who are not palliative care specialists. We need to be thinking about the implementation of that in a system under pressure. We also need to think not only about what the training is, but about how we implement it and, crucially, evaluate it, so that we can be confident that it is safe.
The Chair
I remind Members that we are now halfway through and we have seven Members to go. We have already had six questions, and we have seven to go in the next half hour. I repeat that I do not want to interrupt our witnesses at the very end to stop the panel.