Terminally Ill Adults (End of Life) Bill

Marie Tidball Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Today’s decision has been one of the hardest that I have had to make. In my career in disability law and policy, I chose not to focus on debates about whether disabled people should be born or whether we should die. Instead, I focused on enabling disabled people to live better, more fulfilling lives.

Today, I find myself voting in a way that I thought I never would. I will vote in favour of moving the Bill to the next stage of the legislative process. That has been a difficult journey for me. I have arrived here by looking at the evidence, reflecting on my own lived experience and listening to the many, many constituents who have written to me in support of the Bill, sharing their compelling and tragic stories of death—death which did not come with dignity or respect.

In reflecting on my own life, one moment from my childhood stood out. When I was six years old, I had major surgery on my hips. I was in body plaster from my chest to my ankles, and in so much pain and requiring so much morphine that my skin began to itch. I remember vividly laying in a hospital bed in Sheffield Children’s hospital and saying to my parents, “I want to die. Please let me die.” I needed to escape from the body I was inhabiting. That moment has come back to me all these years later. That moment made it clear to me that if the Bill was about intolerable suffering, I would not vote for it.

I have subsequently had a good life, a fulfilling life, a life where I have worked towards ensuring disabled people are valued by our society. But that moment also gave me a glimpse of how I would want to live my death: just as I have lived my life, empowered by choices available to me; living that death with dignity and respect, and having the comfort of knowing that I might have control over that very difficult time. For so often, control is taken away from disabled people in all sorts of circumstances.

In order to ensure that there is compassionate choice at the end of life, it is right that the Bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards. The choice of assisted dying as one option for adults when facing six months’ terminal illness must be set alongside the choice of receiving the best possible palliative and end of life care, or it is no choice at all.

Having analysed the Bill closely, therefore, there are changes I would want to see in Committee to strengthen those options and ensure the way that choice is presented by medical practitioners is always in the round. People deserve dignity in death, and for those who do not choose to end their lives in this way, they and their loved ones should feel reassured and safe in the knowledge they will receive the very best of care. I would also want to ensure that the final stages of the Bill properly define “dishonesty”, “coercion” and “pressure”. I think it is necessary to embed mandatory language in the Bill around the need for a code of practice on palliative care, as well as improving the regulations on training for medical practitioners. I trust my hon. Friend the Member for Spen Valley (Kim Leadbeater) to champion those amendments and to continue to diligently listen to Members, as she has throughout this process.

However people vote today in this House—a decision of conscience—it is incumbent on all of us to commit to improve palliative, end of life and adult social care. It must be the start of the work that we do in this place to ensure the very highest standards in these areas. That will be a very great legacy indeed: giving people the dignity they need in the moment of death. For many of us across the Chamber, considering these issues has been extremely hard and upsetting. We have had to go to the very depths of our selves to understand what choice we will make today. While we may enter different voting Lobbies, we leave this Chamber shoulder to shoulder. I know we will all work in our own ways to make systemic change to improve the lives of our constituents, and people up and down this country.

[Several hon. Members rose—]

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

Marie Tidball Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Juliet Campbell]

Q So rather than going straight to “I have made this request, or this has been suggested to me, and this is the path we are going down,” there is something that should happen in between.

Professor Ranger: Well, you would not really want any clinician to push this view on any patient. It has to come from the person themselves. That is the key thing around capacity and autonomy. I do not think that people should ever say to a patient or an individual, “Is this something you have considered?” It has to be led by the patient.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Q Professor Ranger, may I pick up on the points that Glyn Berry made about the different circumstances in which patients find themselves? The barriers to healthcare as a result of health inequalities, access to education and disability are well documented. How could your members help to remove the barriers for such groups in access to the provision of assisted dying?

Professor Ranger: It is vital that any of those barriers be removed and that we always maintain outstanding care at the end of someone’s life. The reality is that the majority of palliative care is given by nursing staff, whether it is in the community, in someone’s home, in a hospice or in a hospital. It is key that it be an expertise and a specialist practice in which someone has extra training and extra education. The skills of listening to patients, advocating for them and ensuring that they are pain-free at the end of their life—these are skills that nurses have now, and it is vital that our nursing members maintain them. They are often the one a patient will speak to at 3 in the morning when no one is there.

As Glyn said, it is vital that the wider team be included in the Bill. The Bill talks about the guidance and recommendations being for the chief medical officer, but I think it is absolutely vital that the chief nursing officer be a key part of the guidance and the drawing up of any care, because even in these circumstances it is nursing staff who will give the majority of the care.

[Dr Tidball]

Q To pick up on your important point about advocacy, how would your members detect coercion, undue pressure or dishonesty by family members or other supporting parties on which the patient was relying in relation to seeking assisted dying? At what point would there be a report to the police by your members?

Professor Ranger: Safeguarding is part of our professional responsibility now. Whether it is for a child, an adult or an elderly person, part of our role is to be vigilant against financial misconduct, physical abuse and mental health abuse: any of those things is a responsibility of every nurse now. It is a very good and simple process. You do not have to investigate or give a judgment; you need to refer it to be investigated. That takes the pressure off an individual clinician. Our job is to be vigilant and to refer safeguarding anywhere we think that there is any form of abuse. I think that that process would remain and could be part of how we do things now.

[Dr Tidball]

Q Just to follow up on that, because it is really important: do you think your members would have the ability to pick up on such coercion, dishonesty and pressure from other parties potentially being placed on a patient who is seeking assisted dying? What other training or support would be needed for your members?

Professor Ranger: We would want more support. I am not going to say that we always get it right. Sometimes things happen that we miss and we do not report. I cannot say that we get it right 100% of the time. When the Bill talks about education and training for medical staff, it is absolutely vital that nursing staff are included because we will need to be vigilant around anyone feeling they are a burden.

The Bill would add other skills that we want to make sure that nurses are included in. Education for medical staff is absolutely pertinent for nursing staff, so that nurses build on skills they already have. There will be a difference between the care of someone wanting assisted dying and palliative care. Those are two slightly different skills and it is really important that they are not always lumped together. Being involved in assisted dying will require a specialist skill and specialist training, and we would very much want nursing to be included within that.

[Dr Tidball]

Q But you believe that your members would be able to pick up on and identify issues such as coercion?

Professor Ranger: I do. They are professionals, and I believe they would be able to.

[Jack Abbott]

Q My question, which relates to some of the points made earlier, is for Glyn Berry. Your organisation has recommended a new role: the approved palliative care professional. To go into the detail a bit more, you make a number of recommendations on what that role would include, such as ensuring that the person has the mental capacity to make the decision. First, are you therefore saying that this new role should sit alongside the two-doctor process, which has already been outlined in terms of final decision making? If the approved palliative care professional felt, for example, that this person did not have mental capacity, should they be able to, as it were, stop the process?

Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.

Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.

In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.

Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.

It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.

One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.

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

Marie Tidball Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sean Woodcock (Banbury) (Lab)]

Q Coercion is one of the main issues that people who are concerned about the Bill raise in opposition to it. That would include myself. We had many distinguished witnesses this morning, and the view was that coercion is “rare” in healthcare generally. It was almost given across that we did not need to worry about it, because staff are so well trained in safeguarding and so on, and they have such a level of experience. What are the views of the panel on that? Is coercion something that we should really not be so concerned about?

Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.

It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.

We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.

These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Q My question is for Dr Ahmedzai. The Select Committee inquiry into assisted dying received evidence that there were not any indications of palliative or end-of-life care deteriorating in quality or provision following the introduction of assisted dying. Indeed, the introduction of it has been linked with an improvement in palliative care in several jurisdictions. I have two questions, if I may. What more could the Bill do to strengthen the available choice at the end of life and the regulation of these choices as set out in the codes of practice? If you could answer that one first, I will come back to my second question.

Dr Ahmedzai: I have visited many of the jurisdictions around the world—such as Oregon, where I met the original judge who brought in the law, as well as the doctors, nurses and patients involved—and it was clear to me that if patients had not accessed palliative care, they were pointed towards it. Obviously, you cannot force anybody to go and have palliative care, but they were certainly informed about it.

In the Netherlands, I commend a system for doctors called SCEN—support and consultation on euthanasia in the Netherlands. These are trained doctors working for the equivalent of the BMA, I believe, who, as Dr Clarke has referred to, are going and supporting doctors who are not familiar with things. They often come from a background of palliative care and pain medicine, so they are making options available that other doctors in the process, for instance, have not brought up. In Australia, there is clear evidence that palliative care is becoming more available.

The European Association for Palliative Care produced a report more than 10 years ago in which it examined all the countries in Europe at the time, and it found there was evidence that palliative care was improving in scope and availability alongside the forms of assisted dying that were happening there. I am reassured that bringing in some form of assisted dying, particularly the form proposed here, would be a boost to palliative care.

One of the things I would like to see is that anybody who is involved in the process is constantly asking the patient, “What about palliative care? Have you actually accessed it?” Right now, if they have not raised their hand and asked for assisted dying, no one has that conversation with them. They are in a vacuum and a bubble, and not receiving palliative care, whereas this provision would possibly make it more available.

[Dr Tidball]

I have two follow-up questions on that basis.

[The Chair]

Order. I do not want to squash any discussion, but I ask Members and the panel to bear in mind that we have until 3.15 pm for this session. I will be as lenient as I can with questions.

[Dr Tidball]

Q On the basis of your 39 years of experience and the Select Committee evidence that I mentioned earlier, do you acknowledge that improvements on both assisted dying and palliative care can run in parallel and do not need to be mutually exclusive?

Dr Ahmedzai: In the interests of brevity, yes.

[Dr Tidball]

Q You talked about the role of medical practitioners discussing this issue, which is of course in clause 4(2) of the Bill. Paragraph 4.2 in your own evidence was very helpful in discussing that, as it makes it clear that it is

“entirely consistent with current medical practice and with compassionate care”

to raise assisted dying. You also said that raising the topic did not have adverse effects. How could clause 4 be strengthened to ensure that patients are presented with a range of treatment options at the end of life and relay any concerns that others have raised about suggestibility where this is mentioned in isolation?

Dr Ahmedzai: That is a complicated question. The first point is that right now, as Dr Clarke pointed out, it is scary to patients to be told that they may actually be receiving palliative care. When it has been mentioned—by an oncologist, for example—many patients say, “I do not want that. Don’t let them come anywhere near me or anywhere near my relatives.” It is not unusual that people may have an adverse reaction to just hearing about the service, but here the difference is that the person has actually asked for it.

I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies. It used to be thought that if you mentioned suicide to somebody, it would give them the idea, but of course it does not; it saves them, because they say, “Thank you. Yes, I was having those thoughts.” Bringing up assisted dying is never going to be harmful to the person, even if they had not thought of it. They will just say, “Well, it is not for me.”

[Dr Tidball]

That is very helpful; thank you.

[Rebecca Paul (Reigate) (Con)]

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

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

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

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

--- Later in debate ---

[Naz Shah]

Q Following up on that, in the cases in which you authorised prosecution for murder or manslaughter, were issues of coercion ever involved? What were the bold points—the top lines—of those prosecutions?

Sir Max Hill: That small handful of cases involved an elderly couple where either he—it was usually a he—or she had chosen to bring to an end the life of their lifelong partner and, once that act had been carried out, claimed that it was an assisted suicide in circumstances where the surviving partner was merely carrying out the wish of the person now dead. There are a handful of cases in which that is clearly wrong and should not be accepted and where murder should be the offence brought before the court.

The point, though, is that throughout the time that I served as DPP—and, indeed, the time served by all my predecessors—we did not have the coercion offences created by the Bill, which I suggest would be a significant advance, and nor did we have a legal system in which the investigation was taking place before the death. It was the other way around. 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, if I can put it that way, is that that will be reversed, and scrutiny will be before death. In the case of coercion, where it fits the new potential clauses, prosecutions can—and, I am sure, will—be brought.

[Dr Tidball]

Q It is extremely helpful to understand the opportunity for scrutiny before death. Building on that point, are there any safeguards around those practices that are not currently included in the Bill but should be, particularly around detecting coercion and exploring alternative care options? I also have one follow-up question, if I may.

Sir Max Hill: I think that coercion and the coercion clauses in the Bill should be read alongside the capacity clauses. What we are looking for, as required by clause 1(1) and clause 1(2), is a clear, settled and informed wish, voluntarily made without coercion or pressure. Those aspects were taken, at least in part, from the Crown Prosecution Service guidance on 1961 Act cases. Capacity involves understanding information, retaining it, using it and communicating it. If those hallmarks are not there, you may be in a situation where you should be considering coercion. I think you read the two together.

To answer your question directly, the criminal liability clauses—clause 24, and the new offences in clauses 26 and 27—are robust. As a matter for your scrutiny, they are aspects that we do not have in the law at present. There is, of course, the addition of clause 36, under which you cannot be a witness or a proxy to the procedure that is enshrined in the Bill if you are too close to the terminally ill person. That is another hallmark of the Bill that will hedge against coercion.

[Dr Tidball]

Q I want to follow up, because this is really important in strengthening the Bill. Based on your prosecutorial experience, what key elements should be present in the definitions of coercion, pressure and dishonesty? I also have a bit of a technical question, if I may. Do you think they would be better placed in clause 26 or in clause 40, under interpretation? I am asking what more you can say on the key elements of coercion, pressure and dishonesty, and I am asking about their placement in the Bill to make them as accessible as possible to medical practitioners and patients who will want to rely on it.

Sir Max Hill: My inclination is that clause 26, which is part of the full body of the Bill, is the right place for this. As with the interpretation clause, clause 40, and as with the way we interpret statute as a matter of course, there are aspects of other statutory offences or Acts of Parliament that help us when we are seeking to determine what coercion is. The creation of the offence of coercion and control, now very commonly used in domestic abuse investigations and prosecutions, has brought us into this territory. It is not beyond the wit of anybody who seeks to use and interpret this Bill to also look for other parts of statute that deal with coercion.

I make the same point about capacity. What is in the Bill is very slender, one might say, because clause 3 simply invites the reader to look across to the Mental Capacity Act 2005. But that Act is very clear on what mental capacity is and how it is defined. I think what I am saying is that it is a drafting point, and I am not a parliamentary draftsman, but I do not have a problem with the definitions of dishonesty, coercion and pressure being in clause 26, where they are. It is not the only place one would look, though; there are other sources.

[Dr Tidball]

Q You have helpfully acknowledged the link that we need to make on coercion to strengthen this, but on the other two elements—dishonesty and pressure—is there anything else that we need to look to in order to make this more robust?

Sir Max Hill: “Dishonesty” is a term of art in common use, but it is also a term of statute. Anyone investigating or, still more, prosecuting would understand what dishonesty means. I accept that there is a wider point—not so much for interpretation but for understanding—that this Committee may want to consider, of how much of that existing definition needs to be imported into the Bill. As with mental capacity, I would suggest that, beyond perhaps the odd footnote, it is not necessary for you as a Committee to define again what dishonesty means, because we have it elsewhere.

Alex Ruck Keene: On pressure, I think the Committee would be really assisted by having a look at the learning of the High Court judges exercising their jurisdiction under the inherent jurisdiction in relation to people who are said to be vulnerable. They have developed an awful lot of tools, where they are trying to look at people in complicated situations—potentially, but not necessarily, with impairments—who are caught up in what one person brilliantly described as being caught in a spider’s web. Those are the sorts of sets of tools used when judges are trying to work out what is going on, and whether it is the side of the line we consider to be acceptable or the side of the line we consider unacceptable—because “pressure” is doing a lot of work there.

[Jake Richards (Rother Valley) (Lab)]

Q Thank you all for your written evidence. Sir Nicholas, in your helpful written evidence, you adopt Sir James Munby’s criticism of the current proposal for judicial oversight, and you instead recommend what you call a “Spanish-style specialist panel”. Could you set out for the Committee what you see as the benefit of that approach compared to what might be described as the stark judicial oversight of the High Court judge?

Sir Nicholas Mostyn: One per cent would be 6,000 deaths a year. If each took two hours to process in the High Court—you have to read it and hear the evidence; one of them has to be oral and you have to write a judgment—that is 12,000 hours. Each High Court judge does 1,000 hours in court—outside court, they do lots—so you are talking about nearly three quarters of the entire family division doing nothing but this. It is impossible, in my opinion, for this to be done by the High Court. It should be done in the Spanish way by a panel that is set up. In Spain, the chairperson of the regulator sets up a panel for each case—a doctor and a lawyer. They have to agree and they check that everything has been done lawfully. They do not make any value judgment about whether it is in the person’s best interest. They check that it has all been lawfully.

Interestingly, in 2023, 10% extra denials were done by the panel. I do not know whether that was because they were concerned about voluntariness or whether they were concerned about suffering—because the criterion is suffering there—but an extra 10% was done by the panel, so the panel was not just rubber-stamping. They denied an extra 10%. I believe that an ad hoc system like that, with a doctor and a lawyer doing a check, would be the best way of doing it. The High Court—trust me, I’ve just come from there—has not got the capacity to deal with 6,000 cases of this nature.

--- Later in debate ---

[Jake Richards]

Forgive me, Mr Dowd. I meant that, in terms of the assisted dying process in the Bill, there is no automated mechanism for family members, or indeed any third parties, apart from the doctors, to have notice of this intention. Is there a concern, regarding this appeal point, that perhaps interested parties would not know?

Sir Max Hill: I would suggest that the key to this is in clause 12(5), and that is why I have recommended just striking out the words “High Court” and putting in the word “panel”, and then reading the whole of clause 12 as amended, with those situations in which there are steps that “must” be taken—and there are many—and those in which there are steps that “may” be taken.

In clause 12(5), following that logic, we would imagine that a panel, just as the High Court,

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

but

“must hear from…the coordinating doctor”.

The appellate mechanism, which I agree there needs to be, will be looking sharply at the operation of that subsection. In other words, when the panel made its decision to refuse, on what basis did it make that decision and from whom had it heard? We can well imagine situations in which a co-ordinating doctor, having taken his or her own steps to ascertain the views of the nearest and dearest, would satisfy the panel as to what the views of the family are. The reverse of that is that there is no indication here that, having gone all the way through the panel, the family would have been made aware or considered at all. I think that that will be a rare scenario, but I am not a medical professional. I think you can cover that, perhaps with some changes here or there on what you impose on the panel as a mandatory duty and what you leave by way of discretion, subject to the rules of procedure that the panel would then adopt.

[Dr Tidball]

Q I have a question for Sir Max Hill and Alex Ruck Keene. Your insight on clause 12 has been helpful. What procedures would you recommend be adopted for testing and, if need be, challenging the evidence as part of an evidentiary process linked to the panel that you set out?

Alex Ruck Keene: This is, for the moment, predicated on the fact that we are still in the High Court, as opposed to slightly making up policy on the fly about a panel. Assuming it is the High Court, it seems to me the Court has to be discharging a properly inquisitorial jurisdiction, which means it has to be armed with the tools to do that, which includes arming it with the tools to call for its own evidence. It also seems to me that the High Court would have to be armed with its own ability to not just receive evidence from one side and have someone testing it. That then brings you to the only player in town who could possibly do that, which would be the Official Solicitor as advocate to the Court.

I do not want to emphasise too much the question of resources, because if Parliament thinks this is sufficiently important, the resources will be voted through. But it is vitally important to note that the Official Solicitor is completely overloaded, and we would be asking the Official Solicitor to act as advocate to the Court in every single one of these cases. You could not have it be optional; you cannot say that it is some and not others. If it is going to be inquisitorial, the High Court has to have the ability to say, “This is one-sided; someone needs to tease it out,” so the Official Solicitor would have to be funded to be advocate to the Court and, if necessary, instruct lawyers in every single case.

Sir Max Hill: The model that I was espousing would not necessarily involve the Official Solicitor at all. It would make no draw on the administration of the Court or any officer of the Court, still less full-time judges. It would allow the appointment of recently retired judges, as we have in a number of scenarios—surveillance commissioners, for example—and a fresh administration. With that, as with the High Court model at the moment, there is the primary set of provisions, which Parliament must impose, and it is important that that is sufficient for what Alex called an inquisitorial function. Those are in part mandatory—those things that the panel must be satisfied about, which are set out in clause 12(3). Then there are those that are discretionary, which are set out in clause 12(5).

What sits between the two is very important. That is currently expressed as “Rules of Court”, but it would be the rules of the panel, or the commission that appoints the panels. In a court scenario, we are all familiar with criminal procedure rules and civil procedure rules; that is the secondary stage that is reached once the primary legislation has been fixed. That, too, would apply to the commission or panel process, but I do not necessarily think that it would involve using existing, paid judicial resources at all.

[The Chair]

Unless there are any more pressing questions—

--- Later in debate ---

[Naz Shah]

I beg to move an amendment to motion (a), at end insert—

“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.

I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.

This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.

The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.

Standing Together Against Domestic Abuse has said that

“We must echo concerns raised by the VAWG sector”—

the violence against women and girls sector—

“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.

Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.

We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.

We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”

All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.

In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.

[Dr Tidball]

I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.

I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.

[Kit Malthouse]

I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.

Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.

[Naz Shah]

There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—

[Dr Tidball]

I note that Laura Hoyano, who is giving evidence on Thursday, is a domestic abuse barrister. She has also been involved in inquiries on child sexual abuse, and has a great range of experience in that area. She will bring that to the table as a practising barrister working closely on such cases.

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

Marie Tidball Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sarah Sackman]

Q Lord Sumption and Dr Graham, you will have seen that clauses 26 and 27 include criminal offences. Do you have any views on the operability of those criminal offences?

Dr Graham: My only contribution here can be that similar offences in other jurisdictions have been held to be perfectly compatible with European human rights law.

Lord Sumption: I have no problem about the criminal-isation of people who abuse or distort the system, which is what those two clauses envisage.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Q Dr Graham, thank you for your written evidence, which was very helpful and stated your view that the strength of the clauses in the Bill make it compatible with the European convention on human rights in relation to article 2 on the right to life and article 14 on freedom from discrimination. Can you explain why you hold that view? What has been the view of the European Court of Human Rights in relation to assisted dying laws in other signatory states?

Dr Graham: There are two main challenges to this legislation, and to legislation like it, in relation to the European convention. As you say, one relates to article 2 and one relates to article 14. The article 2 challenge can be dismissed fairly quickly, because we have authority from the European Court saying that

“the right to life enshrined under Article 2 could not be interpreted as per se prohibiting the conditional decriminalisation of euthanasia.”

As a matter of precedent, that is fairly clear.

The trickier argument comes with article 14, which is the anti-discrimination right. There is an argument that goes something like this—I hope that those who hold this view think I am giving it a good airing. By allowing some groups to access assisted suicide, but not other groups—in this Bill, allowing terminally ill adults who meet the criteria in the Bill but not non-terminally ill adults who do not meet those criteria—you are treating two different groups in different ways, and that is discriminatory. There is an argument that, because of that, the courts would find that the Bill is unlawful and needs to be expanded—that groups outside of the terminally ill that meet the criteria of the Bill need to be given access to assisted suicide. I think that argument does not work for a few reasons, chief among which is that in our jurisdiction treating different groups differently is not unlawful. Treating different groups differently without good justification is unlawful.

The question of justification, while it is for judges and the courts, is a question on which judges have deferred heavily to Parliament, especially in areas that involve difficult social, ethical or moral issues. If I may be forgiven for reading from a court’s judgment one more time, in the case of SC the Supreme Court said:

“The ordinary approach…gives appropriate weight to…the primary decision-maker”—

the primary decision maker being Parliament—

“a degree of weight which will normally be substantial in…matters raising sensitive moral or ethical issues.”

We can all agree that this Bill involves sensitive moral or ethical issues.

My point is that when it comes to justification, courts are very deferential to Parliament. Courts think that Parliament should be deciding whether treating two groups in different ways is justified or not. That is why, in my view, there is no real truck to the argument that article 14—the anti-discrimination right—will be operative and cause the Bill to be declared incompatible with the convention in any way. I hope that is an adequate summary of my view.

[Dr Tidball]

Q My next question is to Fazilet Hadi and Baroness Falkner. First, I am passionate about ensuring that the Bill creates the opportunity to hear the voices of disabled people in monitoring the impact of its implementation, should it be passed by Parliament, and the treatment of disabled people in the NHS as a result. What structure or mechanism could work to facilitate that? Secondly, would that be applicable to all protected characteristics under the Equality Act, or do disabled people have a specific status that needs special treatment?

Fazilet Hadi: We have a principle in the disabled people’s movement: “Nothing about us without us”. I suppose a simple answer to that question is that whether it is the discussions on this Bill and the voice of disabled people in shaping it, or in monitoring, disabled people must always be at the table. As you all probably know, Disability Rights UK and other disabled people’s organisations oppose the Bill, and I hope I get a chance to say why later.

Should the Bill go through, it would be good to see a monitoring mechanism. I cannot say what that should be, but it would be good to see disabled people shape it. Some 45% of older people are disabled people, so disabled people are going to be very affected by the Bill. It is often our experience that we are the last people who are spoken to; maybe that is what is behind the question. We should of course be at the table now in respect of whatever mechanisms, and in the shaping of any implementation, should the Bill be passed. But as I said, we are opposed.

Baroness Falkner: Can I touch on clause 26 and the earlier question, as well as article 2 rights? Parliament should appreciate that coercion or pressure is not necessarily something that is applied directly by other individuals. The UN published an open letter in advance of the Canadian legislation that pointed out that people with disabilities, older people, and especially older people with disabilities, may feel subtly pressured to end their lives prematurely due to additional barriers, as well as the lack of appropriate services and support. Article 2 goes to the heart of appropriate services and support, as well as the general right to life. It is important that all practical social conditions, support, care and services are in place so that people with serious or terminal illness can decide how and when to end their life freely and without coercion.

On coercionary pressure, we have heard recently about social care provisions. Social care is an integral part of this story, because the data shows that it is older disabled people—disabled across a spectrum including mental health, dementia and so on—who are likely to be in care or to require social services. If we are not going to get the result of those reforms until 2028, we are told, with potentially no legislation in place for another couple of years after that—say, 2030 or 2031—then all of you in Parliament need to think about whether this is putting the cart before the horse. In deciding on these provisions, which are integrally linked to the other aspects of disability and access to care—I hope we will come on to the variable treatment of palliative care later—you need to think about whether this is the right order of things. I will leave it at that and pick up other related points later.

[Dr Tidball]

Q With respect, my question was about whether you think that, should the Bill go through Parliament, there should be some kind of body, possibly an advisory council, that disabled people in particular should be involved with. Your other point speaks to some evidence that we heard yesterday and earlier about the anchoring, where there is assisted dying in the legal system, of the quality and level of provision of palliative care. I would be grateful if you could speak to the point of my original question, which was about the need for some kind of advisory body that includes disabled people, should the Bill pass.

Baroness Falkner: Had there been a Public Bill consultation on the Bill, you would have heard from the different players that need to be consulted. We do not have an opinion on the kind of advisory body, because we would find it difficult to see where it would fit in with the provisions of this particular Bill, but a public consultation in advance of the Bill being written would have been the way to deal with that.

[Danny Kruger]

Q Dr Graham, on the points about article 14, I very much appreciate and welcome your belief in parliamentary sovereignty, and the suggestion that the courts should listen to Parliament—most of us agree with you on that—but it is a big hope. They do have the opportunity, and have demonstrated their power, to object to statute on the basis of the ECHR. As you said, they could allow assisted dying, and indeed discrimination within an assisted dying law, if there was some justification for it.

You are presumably aware of Lord Neuberger’s judgment in the Nicklinson case. He said that there was

“significantly more justification in assisting people to die”

who have long-term chronic conditions and are going to suffer for years than for people who are on the verge of death. I also point out Lord Bingham’s judgment in the Pretty case, which suggested there would be discrimination against people who are unable to perform the final act themselves. Surely, then, there is a very strong case to be made under the ECHR that the Bill would be discriminatory. I would value your response on that, and maybe from Lord Sumption too, if he wants to come in.

My second question is to you both, on article 2. If it were to be allowed, the safeguards that would be required —I shall quote from the Mortier case, which you know well—would be that

“medical professionals are complying with the free, informed, explicit and unambiguous decision of their patients”

without pressure and abuse. Do you therefore accept that this comes down not just to the safeguards in theory, but to how they actually operate in practice? We have heard very serious concerns on that front. Are you confident that the courts would allow this? That is, of course, assuming this is an NHS service, because it could be that they decide it should not be.

Dr Graham: The takeaway message from cases like Nicklinson and others, both at the domestic level and the European level, is that this is a decision for politicians and a decision for Parliament—you mentioned the sovereignty of Parliament—regardless of what Lord Bingham and Lord Neuberger might think personally about or, I suppose, obiter about the relationship between discrimination law and the provisions that were looked at in those cases. For the reasons that I set out earlier, on the justification question, judges in our jurisdiction are heavily deferential towards the decision of our elected Parliament. In any future challenge, and there probably will be a challenge—we do not know, but there is nothing to stop someone from bringing one—the courts will adopt the same line of thinking.

I agree with you completely that the theory and the practice must both be taken into account when assessing whether there are adequate safeguards for the purpose of article 2. All I want to note is that in the Mortier case, which you mentioned—in which the Belgian legislation and its compatibility with article 2 were challenged before the Strasbourg Court—the Court found that there were sufficient safeguards in that legislation. That is despite the fact that if we put the Belgian legislation that the Court was looking at and this piece of legislation side by side, this legislation contains, at least in theory, more and stronger safeguards.

The Belgian legislation did not have a waiting period; did not require judicial approval; was not restricted to a terminal illness; and was not restricted to adults only. Yet the European Court said that there were sufficient safeguards for the purposes of article 2. At least from a precedent-based perspective, I think there is a strong argument for saying yes, the Bill complies with both article 14 and with article 2.

Lord Sumption: I have read Dr Graham’s evidence, and obviously have listened to him this afternoon. I agree with it in its entirety. Dr Graham points out the additional layer of safeguarding in the form of clause 12, but I do not understand him to be suggesting that without clause 12 the Act, if the Bill became an Act, would be defective on human rights grounds.

I also agree with Dr Graham on the question of the likely approach of the courts. The courts would be dealing with legislation that reflected a balance between two very powerful but contradictory moral instincts, both of them fundamental to our legal and social culture. That is not a context in which the courts are going to feel that they ought to be putting their own oar in.

I would also point out that, since the Nicklinson case, there have been a number of decisions of the Supreme Court—two in particular: the Shamima Begum case and the Child Poverty Action Group case on the two-child limit—in which the Supreme Court has expressly said that in issues of this kind, the courts should not devise policies of their own, independent of policies that can be discerned in parliamentary legislation. It is therefore even less likely now that the courts would intervene on human rights grounds than it was at the time of Nicklinson.

--- Later in debate ---

[Tom Gordon]

Q I would like to direct my question to Dr Neerkin. We have heard from lots of different jurisdictions where assisted dying is commonplace now. In those areas, the actual uptake is very small. That is in places where they have a lot less in the way of safeguards than we do in this Bill. Can you comment on the fact that we are talking about a very small group of people for whom palliative care would not be enough anyway? This option might give those people peace of mind and enable them to have a good period of life while they have it, and then choose to leave on their terms.

The point I am trying to get to is, we keep talking about big populations and groups, but in your professional experience, how wide or narrow does the Bill need to be? Do the safeguards in it not already restrict it to a very small group of people whose needs would not necessarily be met by palliative care?

Dr Neerkin: I agree. People who request assisted dying are a tiny proportion—we see that in other jurisdictions. Of those that request it, the number that go through with it is even smaller. As I said earlier, people want to live—people do not want to die. But what people do not want to have is a prolonged death where they are suffering—they want control. In my experience, the number of those that actually really wish for it, ask for it, and would potentially go through with it, is small.

[Dr Tidball]

Q This is a question for Dr Neerkin. That was extremely helpful. We know that Tōtara hospice in New Zealand—one of the largest hospices there—has said that it does not think that assisted dying and palliative care are counter to each other, and that a system can work where they are running side by side. Can you touch on, first, any evidence we have from countries that have adopted assisted dying that demonstrates that marginalised groups are seeking it much more regularly than those with more economic resources; and, secondly, choice and the ability for assisted dying to give greater dignity to individuals seeking that choice?

Dr Neerkin: Some of that question, at least the first part, would have been better posed to the people from Australia and America this morning, who probably have more details on it. I have looked extensively at the data from Oregon, and there is not a skew towards the elderly, the disabled, people of different minorities or people in poverty. I do not think there is a skew. You actually tend to find that people are younger and from wealthier and more educated backgrounds. Looking at it from that side of things, they are probably more knowledgeable in that background. Could you repeat the second part of your question?

[Dr Tidball]

Q The second part of my question was this. You talked very eloquently, as did Professor Tom Shakespeare this morning, about the Bill enabling choice for those who want it, particularly those who believe it would give them a more dignified death, but could you expand on how it provides that element of dignity?

Dr Neerkin: Part of it is about choice and control, which I mentioned before. People are very vulnerable. We have heard a lot about vulnerability, but not many people have defined what vulnerability in a dying person is. I think for a lot of people it is about that total loss of control and loss of self and who they are—that they are just another number. For them, it is about trying to regain some of that control and autonomy and being able to voice for themselves what they want. That is what I tend to see that people want back at the end of life.

[The Chair]

This will be the last question for today.

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

Marie Tidball Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Dr Fellingham, you had your hand up.

Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are

“Loss of dignity, or concern about it…Loss of autonomy, or concern about it”,

and

“Less able to engage in activities making life enjoyable, or concern about it”.

What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Q Looking ahead to our next panel, are you aware of any serious concerns being expressed by disabled people about the Australian assisted dying laws and any risks they might pose to this group? It would be very helpful to hear any recommendations you have with regard to building safeguards into the law that we are scrutinising.

Dr McLaren: Throughout the roll-out of the voluntary assisted dying legislative process in the other states that I have been involved with across Australia, the main concern that has come from disability organisations is that they do not want to be found eligible for the sole reason of their disability, and that is involved in all our legislation—that people are not eligible purely on the basis of that. They also voice a very strong concern that they do not want to be found ineligible based on their disability either. They would like to have access to this in the event that they have a disability but then also develop a terminal illness. That has been a very strong voice throughout all the debates in Australia and New Zealand.

Dr Mewett: I wanted to reiterate that, of the 13 of us who were representing various people on the implementation taskforce in Victoria, we had one disability advocate who was a strong voice in ensuring that the laws were not discriminatory in any way against patients with any degree of disability. I would always indicate that this is a voluntary assisted dying programme. The word “voluntary” is not used often enough in this space.

[The Chair]

Dr Fellingham, do you wish to add to that?

Dr Fellingham: Just briefly—I will go back to the point that I was making in my introduction. It is extremely important to keep in very sharp focus that the law you are proposing in the UK is similar to the laws that exist in Australia and New Zealand and most of the laws in the United States, but it only applies to people who are terminally ill, and therefore people who only have a primary disability, a primary mental health condition, a primary dementing condition or a non-terminal condition such as anorexia or a whole host of other conditions, who are found eligible in the more permissive laws, simply would not be able to be found eligible. It is really, really important to keep it in very sharp focus that this law is only for terminally ill people.

[Dr Tidball]

Q Thank you. That is extremely helpful. Clause 2(3)(a) and 2(3)(b) cover the point that you made about those groups, stating:

“For the avoidance of doubt, a person is not to be considered to be terminally ill”

just by those statuses.

I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?

Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.

Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.

That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.

Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Q Yesterday, we heard from some clinicians from the USA, who outlined how they have reviewed the scheme in practice. They said that their waiting period between the two clinician appointments has been reduced from 14 days to 48 hours, and that in some cases the second clinician has been removed and replaced by a nurse practitioner. Have you undertaken a similar review? Have you made any changes as a result?

Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so-called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock-out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.

Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.

I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three-month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.

--- Later in debate ---

[The Chair]

Thank you. I call Marie Tidball.

[Dr Tidball]

Q Just to clarify, that word is in clause 2(3). I will ask a question of Professor Tom Shakespeare first and then, if I may, I have a follow-up of Dr Miro Griffiths. Tom, why is it so important that disabled people have a choice? I made it very clear when I voted for the Bill on Second Reading that I would only do so because it was not about intolerable suffering but was limited to six-month terminality. From the perspective of disabled people, can you expand on that point and share any research that has been done in jurisdictions where equivalent legislation is now in place?

Professor Shakespeare: I would say that it is very important that the Bill is for terminal illness only. It should give a sense of safety to disabled people. In jurisdictions like Oregon, California and Montana, which Chelsea has mentioned, we have not had an expansion from terminal illness to, as it were, suffering. If you do not carry suffering in the Bill, you will not get into the situation that Canada got into.

I gave evidence because Canada was seeking—some people were seeking—to expand the coverage of their Act to all disabled people. They did so by referring to the Canadian charter of rights and freedoms and to the word “suffering”. They said, “Look, lots of people are suffering, not just terminally ill people”. Therefore, it is very important that it is only terminally ill people who are covered by this Bill. That, as I say, should give disabled people some support.

As you know, Marie, we talk about choice and control as being the principles of independent living. Disabled people should have rights over their lives. This applies to people who are disabled, yes, but terminally ill primarily. That is why they should have this law, which gives them choice and control over their lives. They are going to die anyway, but it removes the fear and reality of a difficult, unpleasant and undignified death.

[The Chair]

Dr Griffiths, do you want to add to that?

Dr Griffiths: This issue highlights a fundamental flaw with the Bill, which is the nonsensical division between a terminal illness and what constitutes being a disabled person. Section 6 of the Equality Act 2010 states that a disabled person is somebody who has a “physical or mental impairment” and the impairment

“has a substantial and long-term adverse effect”

on their

“ability to carry out…day-to-day activities.”

If you have a terminal illness, it is likely that you will be defined within the terms of what is outlined in section 6, so it is a fundamental flaw, because disabled people will be incorporated within this.

The issue also highlights this arbitrary nonsense about a six-month perspective. What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?

These concerns highlight fundamental flaws, but they also play into what a key issue: the campaigning that will continue after the Bill, if it is to succeed. You will get people who will say, “Why not five months, or seven? Why not other conditions that are not being highlighted in our current discourses?”

--- Later in debate ---

[The Chair]

I will come back to Marie Tidball, but I want to make it plain to the panel that, while questions are being directed to specific panellists, if anybody wishes to come in on something, do please indicate.

Chelsea Roff: To your question, Mr Gordon, about whether this is the safest Bill in the world, I know that due care has been taken to make that happen. One of my biggest concerns about clause 2 of the Bill is that it makes no distinction between a person whose illness can become terminal if they refuse or cannot access treatment—for instance, someone with diabetes. Type 1 diabetes affects 300,000 people in this country, and it often co-occurs with eating disorders. The way this is written would not prevent someone who chooses to stop taking insulin from qualifying as terminal.

In the US, we are seeing voluntary stopping of eating and drinking used to circumvent the terminal illness safeguard. I will quote the American Academy of Aid-in-Dying Medicine, which is the professional body:

“Legally, there is nothing in the letter of the law…that explicitly prohibits accepting voluntary stopping of eating and drinking as a terminal diagnosis to qualify for aid in dying.”

It describes this as a “legal gray zone” that would “essentially eliminate” the terminal illness criteria. There is nothing in this Bill as written that would prevent that, and we have to look at the letter of the law, because it expands through interpretation, not just amendments.

[Dr Tidball]

Q This question is for Professor Tom Shakespeare and Dr Miro Griffiths. One of the amendments I am backing would establish an advisory council on the impact of the Bill on disabled people, because I am passionate that we monitor the impact on that group of people, should the Bill pass through Parliament. What structure or mechanism do you think could work to facilitate that?

Dr Griffiths: This plays into a broader issue around the reporting mechanisms associated with the Bill. I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services.

This goes back to a point that Tom made. While we may see popular opinion within disabled people’s communities, it is worthy of note that no deaf and disabled people’s organisation—these are organisations that are representative of disabled people who engage critically with the issues facing disabled people’s communities—has been in support of this. I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.

Professor Shakespeare: I think the council is a very good idea. It should reflect the range of views, as Miro says. In Oregon, disabled rights advocates have not, as I understand it, opposed the Act that they now have. Of course, it is mixed, but some disability groups are definitely in favour. There is a difference between organisations of disabled people and disabled people on this. Politically, the disability rights community are against assisted dying—they always have been. That does not mean that they reflect what ordinary disabled people want, and that is what is important. I think you should be interested in what people want, and they want this.

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

Marie Tidball Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

Q My question, directed at Chloe, is about the practical application of access to doctors for patients, as suggested in the proposed legislation, and how doctors have those conversations with patients—particularly, when it comes to geriatricians, older patients. We heard from somebody yesterday who said that there were concerns around how older people were treated, and the potential risk of elder abuse. I would be interested in the practical application of those conversations, in your experience.

Dr Furst: First up, a patient has to specifically ask me about voluntary assisted dying. They have got to use words that really imply that that is what they want. I will often ask any relatives to leave so that I can have a conversation just with them, to try and reduce the risk of coercion, and then invite the family back.

One of the practical things that I often ask the patient is when they started thinking about this. Is it something that they have always considered should be a right, or is it more of a new-found belief given their current suffering? I want to understand what their current suffering is. I ask specifically whether they feel a burden on their family and friends. It is an hour-plus long conversation to really understand them and their suffering.

Again, I make sure they understand all the other treatment options available to them and what good palliative care looks like. I will often be prescribing other medications as part of that good palliative care—opiates and anxiolytics. As a geriatrician, I am also making sure that their mood is also addressed, and that this is not a reactive depression. I am really doing a holistic and comprehensive geriatric assessment as part of that voluntary assisted dying assessment as well.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Q This question is for Dr Furst and Professor Blake. Many of us on the Committee are committed to the need to protect disabled people and to ensuring that the Bill has as many safeguards in as possible. We heard evidence yesterday that anorexia may qualify under assisted dying laws in other jurisdictions. Have there been any cases of people with anorexia accessing assisted dying in Australia, and in your view do the respective laws across Australia allow for that? Secondly, are there any lessons that we can learn on building in safeguards in relation to those with learning disabilities?

Dr Furst: All around Australia, mental health as the primary terminal illness is excluded, so anorexia by definition is excluded. I have had a patient come to me with anorexia as their terminal illness requesting voluntary assisted dying. It is a relatively easy assessment because they do not meet the standard criteria, and I was able to explain to them that they were not eligible. But it opens the opportunity to have good, in-depth conversations with them about what they are going through.

I cannot talk to the learning disabilities question, other than to say that every time a patient comes to me the assessment is directed to the patient. I saw a patient today with motor neurone disease who is on continuous bi-level positive airway pressure and is using Eyegaze. The assessment and conversations I have with her are based around what she can do for me. I have had patients who have been able to put a thumb up and down, and I have had trachy patients. I cannot necessarily talk about learning disabilities, but as a holistic practitioner you are trying to make sure that the patient in front of you understands everything and is given the full opportunity to express their wishes.

Professor Blake: I would just say—

[The Chair]

Order. I can only take one answer. I am sorry, Meredith, but we have not got time. It is one answer to one question.

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

Marie Tidball Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

We must stick to the timing of the sittings resolution, as decided by the Committee. We have a long list of people who want to ask questions, so it will be one question with one answer; if Members could indicate who they would like to answer, that would be helpful.

Before we proceed, Dr Tidball has a declaration of interest to make.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I just want to make sure that it is on the record that I have been taught by Professor Hoyano; indeed, well before I was elected, she was a colleague at work.

--- Later in debate ---

[Kit Malthouse]

Q My question is to Dr Richards. Obviously health service medics are dealing with end-of-life situations at the moment—they are withdrawing treatment or declining to give treatment if they think it is futile. In those circumstances there are a set of safeguards. How do those safeguards compare with the safeguards in the Bill? From your research, do you think there is any adjustment required to the safeguards we have at the moment?

Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.

[Dr Tidball]

Q My question is to Dr Richards, although if Claire Williams has anything to add, it would be really helpful. We have heard evidence from overseas about the value of doctors being able to have holistic discussions about end-of-life choices under an assisted dying law. What research is there on patient experiences in those jurisdictions, in particular the evidence around quantifying the experience of dignity and respect in end-of-life choice making where assisted dying is available?

Dr Richards: Quantifying dignity or respect—

[Dr Tidball]

Or real-life examples?

Dr Richards: So the question is: what is the evidence on trying to find out about this interactional space where you are asking about people’s motivations? Is that right?

[Dr Tidball]

Q There are two elements to my question. The first element is talking through the available evidence on how those holistic processes work in countries that have assisted dying. Secondly, we have heard a lot about choice from witnesses across the last two days, but a lot of the consideration about choice is about enabling patients to arrive at greater dignity and respect in their death, so it would be useful if you could reflect on any evidence around that.

Dr Richards: By holistic processes, I assume you mean the multidisciplinary team conversations that we talked about in the previous session.

[Dr Tidball]

Yes.

Dr Richards: Maybe Nancy knows the evidence on that. Talking about gaps in research, I am an anthropologist, so I am interested in the discourse and the conversations that are happening, and I think there is a lack of evidence about that. We have a lot of evidence where it is tick boxes, for example, about motivations and procedure being following. We have less qualitative, in-depth, interactional evidence about that kind of holistic decision making.

Professor Preston: We have done some research where we interviewed doctors and healthcare workers who have had those conversations. The majority decide against it, but they are still having those conversations. We also heard the experience of the bereaved family, and what it was like to have those conversations. On the whole, the conversation is predominantly about palliative care—“Can we do something different? How can we meet and assess your needs?”

In some cases, the doctors in palliative care, particularly in Switzerland, certainly would never suggest assisted dying, but if the patient asks for it, they equally do not advise them how to get an assisted death. In some cases they said they sort of consciously blocked the conversation, so that the person timed out and could not have it. The emphasis is perhaps the other way in places like the Netherlands and Belgium, where it has been around longer and is much more integrated into other services, such as care homes and palliative care, as part of a holistic assessment.

I remember visiting a team in the Netherlands, and when they got a new patient they said, “We assess them for their preferences about whether they want to die, about resuscitation, about advance care planning and about euthanasia.” My jaw dropped; I was British—this was illegal. They do it in such a natural way. They said, “We need to plan that for them, because we need to understand what is right for them.” They are not suggesting it—they are just trying to take it on board. I would say that the predominance of the conversation is about palliative care, but if the patient wants the assisted death, they either might assist—which is rare—or suggest how they go to a right-to-die association. But more likely they will still tell them how palliative care can help.

[Naz Shah]

Q Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”

What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?

Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

--- Later in debate ---

[Sarah Olney]

Q Dr Price, I am really glad that we are able to have the Royal College of Psychiatrists in front of us today; thank you for making the time. I want to ask you about paragraph 11 of your written evidence, which states that it is the royal college’s view that the Mental Capacity Act

“is not sufficient for the purposes of this Bill.”

Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?

Dr Price: Thank you. In answering this, I will also 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.

We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.

As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.

One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.

[Dr Tidball]

Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill.

Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion.

For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about “do not resuscitate” or “do not treat” decisions, and they were not being properly prepared for or supported in those discussions. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.

Also, building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.

On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.

[Sojan Joseph]

Q I want to come to you, Michael. The Royal College of Psychiatrists has given a written statement, which says:

“Mental disorders, such as depression, are more common in people nearing the end of their life. Delirium is more common… Hopelessness is a common symptom of depression…And people’s capacity and consent can be affected when they are going through this condition.”

In the last few days, we have heard much evidence that expressed concern about capacity assessment and that said, as Dan mentioned, there should be an advocacy service available. Rather than having the current model of two doctors and the court, if we have a panel with experts on it who can consider psychosocial assessment and capacity, would that make the Bill stronger, with more safeguarding being introduced to it?

Dr Mulholland: Sorry—can I check whether that was a question for me at the Royal College of GPs or a question for the Royal College of Psychiatrists, because I think that statement was in their evidence?

--- Later in debate ---

[Naz Shah]

Q Under clause 4(2), doctors would be allowed to raise the issue of assisted dying with a patient, unprompted. Dr Rachel Clarke gave evidence to this Committee that, in some circumstances,

“The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]

We heard from Dr Jamilla Hussain yesterday. She talked about mistrust of the NHS, particularly post-covid, where people had DNRs attached to them—disabled people and people of ethnic minority backgrounds in particular. Dan, are you concerned about the potential impact on people with learning disabilities?

Dan Scorer: Yes. One of the first things that I said earlier was about how the initiation of that first conversation is potentially an extremely risky and dangerous moment for people with a learning disability who are terminally ill. Your question is absolutely spot on, from the point of view that it could be highly suggestive and push people on a course that they may not want to go down. That is why I am suggesting that that initial conversation has to be incredibly well supported and structured.

There should, in our view, be an advocate who is supporting the person and preparing them for that discussion. Under the principles of the Mental Capacity Act 2005, the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life. That discussion with a clinician should not be taking place until the person has been able to consider that information and have support from an advocate, so when the conversation does happen the person is fully informed and has had time to think about what their wishes might be. That would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, “This is what you should do.” We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.

[Dr Tidball]

Q Dan, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body?

Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed.

Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.

[Lewis Atkinson]

Q It is late, and I am far from being an expert on Welsh devolution, but I want to ask Professor Lewis a question, not least because we have not come to him for a little while.

Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?

Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.

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

Marie Tidball Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Sarah Olney]

I have a suspicion that the hon. Gentleman may have made that point already in one of his many interventions. Withdrawing treatment is not the same as someone making an informed wish to have their death assisted. That is why we need to be very careful about considering whether the Mental Capacity Act is appropriate for that kind of decision. That Act is being used in a way it was not designed for. To use this definition of “capacity” is to accept the premise that this is just like any other treatment option and not qualitatively different, and fails to recognise the complexity and gravity of the decision.

The Bill also fails to consider that there may be a risk of assessor bias—that sometimes it may well be that a doctor who makes an assessment may well have their own views about the suitability of assisted dying as an option for that particular patient. They may be in favour of it, or they may be against it. If that were to sway them towards making an assessment against capacity, that could have lots of serious implications for the patient.

I have proposed amendment 34 because I think it is the best way forward at this stage, given the variety of evidence we have had and the real difficulty for us in this room of making an appropriate determination of the extent to which the Mental Capacity Act’s use may be modified for this purpose, or of coming up with something entirely new. I think the best way forward is to give the power to the Government—to the Secretary of State—to define the term “ability” in relation to this legislation at a later date.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

With respect to the hon. Member for Richmond Park, I do not support her amendments, which seek to replace the references in the Bill to the Mental Capacity Act with the concept of “ability”. First, medical practitioners already know, regularly use and well understand the Mental Capacity Act 2005. As a result, as Professor Chris Whitty said in evidence, where practitioners conduct such an assessment of an individual separately, they are usually in agreement in their decisions about the outcome in relation to that individual. That was also mentioned by my hon. Friend the Member for Stroud.

Secondly, the term “ability”, unlike mental capacity, is not an existing concept in law that we can draw upon in the context of complex medical decision making about consent to medical treatment. I therefore do not accept that it is a low bar.

[Sarah Olney]

Will the hon. Lady give way?

--- Later in debate ---

[Dr Tidball]

No, I will make some progress.

To replace the established concept of mental capacity with “ability” would create more problems than it seeks to solve, and is not underpinned by a clear statutory basis. Furthermore, the language the hon. Lady uses in her new clause 1 only echoes the wording of the second leg of the two-stage test in the MCA, in its language of fully understanding, using and weighing the relevant information. It does not, however, have the scaffolding and clarity of the five principles set out in the Mental Capacity Act, and it is a pale imitation of the second stage of the test of capacity, which is already in section 3 of the MCA.

Thirdly, the use and application of the Mental Capacity Act has been applied and litigated upon in our court system over the last 20 years, further nuancing its application in complex medical decision making and explicating, for example, the five principles in the MCA and the subsequent two-stage test for capacity. Contrary to what colleagues on the Opposition Benches have said already, it is used in cases where treatment is withdrawn. It is important to understand that in those circumstances, such withdrawal is not seen as an omission; it is seen as a deliberate act. It is therefore analogous to the usage in the Bill as proposed.

Fourthly, I have deep concerns that the use of the term “ability” and the concept expounded in new clause 1 imports an ableist approach, which I do not welcome, as someone who has worked in disability rights and policy for more than a decade and a half.

To return to my first argument, about the familiarity and usage of the Mental Capacity Act by medical practitioners, clinicians and the wider social care profession for two decades, many family members will be familiar with the term and used to using it as part of the wider care of people with learning disabilities, autism and mental health problems. The boundaries of those who are familiar with the concept go well beyond the walls of only medical practitioners.

In oral evidence, chief medical officer Professor Chris Whitty stated that the Mental Capacity Act

“is used up and down the country by doctors and nurses every day; they know it and they understand it. Although…it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, ‘Does this person have capacity?’, in almost all cases you will get six or seven identical answers, because people are used to using it.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]

To unleash the tiger of an unknown and untested concept of ability into a Bill that would benefit better from the well understood, measured and principled approach of the Mental Capacity Act 2005 does not best serve the patients that I know the hon. Member for Richmond Park seeks so carefully to protect. It is therefore worth laying out the paradigm that underpins the MCA and the principles it legislates for, and why it is so important to retain this at the heart of the Bill.

The presumption of capacity in the Mental Capacity Act exists because it is considered a fundamental principle of respecting individual autonomy, meaning that every adult is assumed to have the ability to make their own decisions unless there is clear evidence proving otherwise. This protects against unnecessary interference in people’s lives and ensures that they are treated with dignity and respect, even if they may have a disability or medical condition that could potentially impact their decision-making abilities.

I want also to reflect on the robust language in clause 2(3), which states:

“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—

(a) a mental disorder, within the meaning of the Mental Health Act 1983;

(b) a disability, within the meaning of section 6 of the Equality Act 2010.”

That provision, the tightly drawn limit on the need for the person’s terminal illness to leave them with only six months to live, and the third stage of the test—using the Mental Capacity Act to understand their decision making—mean that we have a strong set of safeguards.

[Danny Kruger]

Will the hon. Lady give way?

[Dr Tidball]

I will give way to the hon. Member for Richmond Park, who asked first.

[Sarah Olney]

The hon. Lady has moved on considerably from the point that I was going to make, so I took it that she was not going to take interventions. Although I would have liked the opportunity to respond to some of her points, I have kept my counsel. Since she has now given way, I want to make something of a point of order. The hon. Lady mentioned that she thought my use of the word “ability” was ableist, and I want to put on the record that I had absolutely no intention of it being interpreted in that way. I meant no offence, and I hope that the word would not have been considered in such a light. If that caused any offence, I apologise. I hope that the general meaning of the word “ability” is well understood in this context.

[Dr Tidball]

I am grateful to the hon. Lady for making that statement. That is not the assumption. As I will say later, the term “ableism” is very much grounded in a deficit model of disability, which assumes that somebody is not capable of doing something themselves—for instance, making important decisions—whereas the Mental Capacity Act starts from a different perspective: it presumes that the person will have the ability to do something until proven otherwise. That is why I feel that the concept of ability does not align well with what is needed in understanding and providing autonomy to people making very difficult decisions at the end of their lives.

[Danny Kruger]

The hon. Lady accurately quoted clause 2(3) about a person not being considered to be terminally ill “by reason only” of having a mental disorder or a disability. That word “only” is very important, as she acknowledged. Does she recognise that that explicitly allows for somebody whose judgment might be impaired by a mental disorder still to be eligible for an assisted death, because they would still be judged to have capacity under the terms of the Mental Capacity Act? That term “only” is in fact not a safeguard; it is an access to an assisted death for somebody with impaired judgment.

--- Later in debate ---

[Dr Tidball]

I appreciate the hon. Member’s intervention, but I do not agree. Taken together, the parameters around the six-month limit, clause 2(3) and the requirement for a mental capacity test cumulatively create a safeguard in the Bill.

Importantly, the MCA’s two-stage capacity test is already underpinned by robust safeguards, which address exactly the issue the hon. Gentleman raised. Stage one asks whether there is a disturbance or impairment in the person’s brain or mind, and stage two asks whether the disturbance or impairment is severe enough that the person cannot make a specific decision. That two-stage test already deals with the issue he raised. The references to the Mental Capacity Act in the relevant clauses of the Bill ensure, crucially, that we import that test too.

Elements of the language in the new concept of ability proposed by the hon. Member for Richmond Park appear to attempt to echo the second stage of the Mental Capacity Act test, as just described. That has four elements: understanding information about the decision to be made, retaining that information in the mind, using or weighing that information as part of the decision-making process, and communicating the decision by talking, using sign language or any other means. It is important to say that those core elements are built on the scaffolding of the five principles of the MCA, working in a progressive way.

Opposition Members talked about the unwise decision, but the principles in the Mental Capacity Act work collectively and cumulatively together. That is only one step, then, which is followed by the fact that decisions must be taken in the person’s best interest, and there is well-worn and well-trodden understanding of how we ascertain that. It is important that those things all work together. The issue is already addressed under the MCA; if we do away with the MCA, we lose not only the scaffolding of the five principles, but the important safeguards of the two-stage test.

[Naz Shah]

My hon. Friend made reference to that already being done, but where is the evidence that the capacity stage she talked about is actually happening? We had evidence from the Royal College of Psychiatrists and, as she said, Professor Chris Whitty. Where is the evidence that it is being done well, as things stand?

[Dr Tidball]

I do not have a list of the case law in front of me—I am sure it will be possible for that to be found for my hon. Friend—but it is done regularly. The Mental Capacity Act is used regularly in decisions about the withdrawal of life-support treatment. That is the case, and she is welcome to search for the case law.

[Sarah Olney]

The hon. Lady talks about the four tests and parts of the Mental Capacity Act; the point I was making was that we want to retain elements of the Act, although using it in its entirety is problematic in this context. The four functional tests about whether someone is capable of making a decision absolutely should be retained—as she said, that is well tested, it works well and people understand in a court of law exactly how to apply it—but some of the other elements of the Mental Capacity Act are problematic. That is why I seek to redraft “capacity” to “ability”—I accept that that might be a problematic word, but I hope the hon. Lady will take on board my earlier comments—and that is what is important. The hon. Lady is saying we should not take out those bits of the Mental Capacity Act that are valuable and important, and I agree.

[Dr Tidball]

I am pleased to hear the hon. Lady’s agreement. As someone who has worked in this space for a long time, I say that if she does not want to have the impact in law of putting in place a concept that would be ableist and take a deficit model of disability, we need those five principles that are already embedded in the Mental Capacity Act. We also need the stringent two-stage test, the second stage of which has the four elements that I set out. Only then can we be certain that we are approaching the paradigm of this complex and important decision making as one where we understand the autonomy and best interests of groups of people we all wish to best protect.

[Sojan Joseph]

Will my hon. Friend give way?

[Dr Tidball]

I will make some progress.

The concept set out by the hon. Member for Richmond Park is the bare bones of what is needed in the complex decision making required across various stages of the Bill. In such decision making, the MCA has a wide and well-used toolkit to determine capacity. That leads to my third point. The Mental Capacity Act has been applied and litigated in our court system over the past 20 years. The chief medical officer, Professor Sir Chris Whitty, said in his evidence that the Act

“has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]

He continued later:

“If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 36, Q14.]

I do not see sufficient clarity in the hon. Lady’s concept as set out in the amendment.

At a later evidence session, Yogi Amin, a solicitor and partner at Irwin Mitchell, augmented Sir Chris Whitty’s argument by saying:

“I wholly recommend and support the idea…to defer to the Mental Capacity Act for capacity assessments. I have been working in this area for over 20 years, before and after the Mental Capacity Act came in, and I have done cases all the way up to the Supreme Court, as well as day-to-day different cases around the country. It is well understood how capacity assessments are done, and it is ingrained into the practice of practitioners generally and of legal practitioners in the courts.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]

He continued:

“It is a well settled and understood approach to the law, and producing a new one would throw up a whole new conundrum, where people would be questioning how to approach it, etc. It is not broken—it works well.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]

Finally, for further clarity, I will vote against the amendment because of the ableist assumption in both language and concept. Ableist language assumes that disabled people are inferior to non-disabled people and perpetuates deficit discourses about such groups. I believe that this does not take the approach that we see in the paradigm of the Mental Capacity Act, which puts disabled people’s choices, autonomy and control over their choices at the heart of this legislation.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

I thank the hon. Member for Richmond Park for tabling the amendments. Fundamentally, I do not agree with them, but I am grateful for her good intentions. I understand the concerns that she has raised, and she makes an eloquent argument, but I fundamentally disagree.

In my view, the amendments would only lead to abandoning the well-established principles codified within the Mental Capacity Act. They would introduce a degree of woolliness and legal uncertainty by introducing of a new term that is, as yet, undefined. That would make the operability of the Bill so much harder and would move us away from the Mental Capacity Act, which has a heritage of some 20 years and is already well established in the use of advance directives around organ transplantation, the withdrawal of treatment and the decision to undergo major operations that can have life-changing or life-limiting consequences.

--- Later in debate ---

[Danny Kruger]

That is absolutely right. I do not think best interests can apply in this case. That is why the Mental Capacity Act is being abused. As the hon. Member for Penistone and Stocksbridge said, it is supposed to be cumulative. We are supposed to consider all aspects of the Mental Capacity Act, and best interests should be part of a consideration—but how on earth does one make a best interests decision about somebody deciding to commit suicide? The hon. Gentleman is right that best interests are excluded in the Bill, so the Mental Capacity Act is not being used, except for this most basic, low-level bar to cross, which is the capacity decision.

[Dr Tidball]

For clarity, I agree with my hon. Friend the Member for Sunderland Central on what would strengthen the Bill. The exceptions only apply where the right and proper Mental Capacity Act process has been gone through and the person doing that assessment has arrived at the point that that person does not have capacity. It is only in that very narrow set of circumstances where they have determined that the person before them does not have capacity to make the decision at hand that they then go to the second look at whether making such a decision would be in the individual’s best interest. The specific exclusions listed in the MCA only apply in that stage.

What my hon. Friend the Member for Sunderland Central is suggesting is that we table an amendment that would add to the list of specific exclusions; that would further strengthen the two stages. First, there would be the full Mental Capacity Act tests that may determine that the person does not have capacity. Such an amendment would give us belt and braces in circumstances where the person does not have capacity. Under the Bill currently, the person would fall out of scope and not be able to seek assistance if it had been determined that they did not have capacity. A belt-and-braces approach would make sure that there is no circumstance in which it could be determined by a medical practitioner or any other that it was in their best interests to follow this course of action.

Under the Bill as currently drafted, those people who have not got capacity as a result of the Mental Capacity Act would not be able to have access to the provisions in the Bill. My hon. Friend the Member for Sunderland Central suggests that we augment that even further so that there can be no doubt that, where it has been determined that the person does not have capacity, following the Mental Capacity Act, we should also add a very clear exception—

[The Chair]

Order.

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

Marie Tidball Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

I rise to speak in support of the amendment tabled by the hon. Member for Richmond Park.

The key word here is “capacity”. There has been much debate around the Mental Capacity Act. I will go back to the oral evidence we heard, as well as the written evidence and submissions in relation to the amendments and the clause. The psychiatrists who have advised are against it. I appreciate and recognise the contributions from my hon. Friends the Members for Penistone and Stocksbridge and for Bexleyheath and Crayford, who spoke eloquently about the word “ability” from his experience. I recognise that we have not had the opportunity to test the concept of ability.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I appreciate my hon. Friend bringing up that point. It is important to note that all Commonwealth jurisdictions that have assisted dying use the concept of mental capacity. We are basing the utility of the Mental Capacity Act not only on 20 years of the courts and medics dealing with it, but on the learning of other jurisdictions that have put assisted dying in place. The concept of ability, however, has no basis in law.

[Naz Shah]

I absolutely concur that we are testing in regard to other jurisdictions. In Oregon, there is not just the assessment of capacity but a referral to a counsellor.

We have had lots of evidence when it comes to capacity, and I will go back to some of the key points. The Royal College of Psychiatrists stated explicitly that the Mental Capacity Act is

“not sufficient for the purposes of this Bill.”

Explaining why, the Royal College of Psychiatrists said that assessing the capacity to end one’s life is “entirely different” from assessing for the capacity to decide treatment.

Three psychiatrists who gave evidence to the Committee —Professor Allan House, Dr Annabel Price and Professor Gareth Owen—all expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. When Professor Allan House was asked why some people might choose assisted dying, he said they are vulnerable. When asked what he meant by that, he said:

“They are not people asserting autonomy and pleasure in their ability to make a choice; they are people describing to you things that are negative influences on their life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 161, Q202.]

Professor Gareth Owen said:

“I have looked at mental capacity a lot in research, and there is no experience of the decision to end one’s own life. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. The reference to the Mental Capacity Act in clause 3 puts you into an area where there is no experience of the central capacity question under consideration. It is very important that Parliament be clear-eyed about that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.]

[Dr Tidball]

On the hon. Lady’s point about being clear-eyed, it is important that we look closely at the drafting of the Bill and the utility of the Mental Capacity Act. There are eight occasions on which a person who might seek assistance can formally consider their decision making, and the Mental Capacity Act would come into play at each of those stages. A person with a terminal illness who wishes to seek assistance does not make a one-off decision; they make the decision eight times during the process, so we have a wide variety of opportunities to ensure that their consent is ongoing.

[Naz Shah]

I recognise that there are eight occasions, but when we debate later clauses I will talk about coercion and manipulation. Those also apply to the issue of capacity, and the Bill refers to them on numerous occasions.

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

Marie Tidball Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

I support my hon. Friend’s comments. Outside of this place, I speak about this topic in a manner that is as sensitive as possible. When we are talking about the legislative changes that are needed to this Bill and how it interacts with other legislation, I will use the correct legal terminology, because I think it is really important that we do that.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I appreciate the hon. Lady raising the need to use accurate legal language. Does she agree, therefore, that introducing “undue influence”, which is used regularly in the law of equity but not in the criminal law, would unhelpfully complicate matters, considering that coercive behaviour is defined in section 76 of the Serious Crime Act 2015 where it provides for an offence of controlling or coercive behaviour in that context? We have 10 years of case law. The hon. Lady rightly pointed to the importance of looking at case law and at how courts have dealt with this; the understanding of coercion in the criminal law offences is well known and well rehearsed, whereas the use of undue influence in the context of criminal law offences, which is what we are dealing with in clause 26, is not.

[Rebecca Paul]

I thank the hon. Lady for that point, but I do not think we are talking about criminal law here. This debate is not relevant to clause 24—it is relevant to eligibility. We are simply saying, through this amendment, that if a clinician thinks someone has been unduly influenced, they would not be eligible. I think the hon. Lady is crossing over to the encouragement point, but these are separate points.

[Dr Tidball]

Will the hon. Lady give way?

[Rebecca Paul]

I am sorry, but I am going to give way to the hon. Member for Bexleyheath and Crayford, if he still wishes to intervene, as I am aware that he has been waiting.

--- Later in debate ---

[Jake Richards]

Let me just make this key point. Members have raised the case of Re T. I must admit that I do not know that case, but I believe it is a 1992 Court of Appeal case about a refusal of treatment, so it is 33 years old. The law has moved on. As the Minister said earlier, the terminology of coercion and pressure is much more modern, and is used in legislation that has been drafted in the last decade, rather than the Suicide Act drafted in the 1950s and that Court of Appeal case from the early 1990s.

Last night, I briefly went back to my law books—I sound like I am really missing my old job—and looked into where the concept of coercion is used across different jurisdictions and areas. This is what I read: “Coercion is a phenomenon the courts have experience of handling. Generally, coercion as a concept in our law involves applying pressure, whether physical, psychological or moral, to force someone to act against their free will or better judgment. This pressure can manifest in various forms, such as threats of intimidation and undue influence, and is recognised across criminal, family, consumer and contract law.” It is used in forced marriage legislation. It is used in criminal legislation. Case law has made it very clear that coercion is used interchangeably with duress, defined as a constraint on a person’s choice.

I feel that we are dancing on the head of a pin. The law has been drafted by one of the most senior parliamentary draftspeople. The Government Minister has confirmed that the Ministry of Justice deems this to be a sensible course of action if this legislation is to proceed.

[Dr Tidball]

Does my hon. Friend agree, as Max Hill did in oral evidence, that it would be helpful to have definitions of the three concepts in clause 26? Although we are discussing an earlier clause, it is important to thread the needle with this statute and ensure that we are looking ahead, as the hon. Gentleman has rightly pointed out.

[Jake Richards]

That sounds very sensible—I think my hon. Friend is talking about her amendment.

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

Marie Tidball Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[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.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I thank the hon. Lady for the work she has done today. As a fellow new Member who sat on the Employment Rights Bill Committee, I can tell her that we debated many amendments from both sides. Sometimes, they arrived from both sides on the day and we had to absorb them on the day.

[The Chair]

Order. Those points are not relevant. We are discussing the amendment.

[Dr Tidball]

Okay. Would the hon. Lady not agree that it has been an extraordinarily rich discussion that reflects our ability to build on the oral evidence that we heard the week before last to develop amendments that reflect that evidence in an extraordinary scenario? This discussion is among the most deliberative that we have had.

[The Chair]

Order. We are having a lot of conversations about the process. [Interruption.] Can the hon. Member sit down, please? There are a lot of conversations about the process and none about the amendment. Can we stick to the amendment?

--- Later in debate ---

[Kit Malthouse]

The hon. Lady is quite right, and she makes my point very neatly for me: the language here is so wide-ranging that it could be anything. Other provisions in the Bill deal with exactly the concerns she expresses. A specific part of the Bill talks about people benefiting financially and how they may not participate. We had a long discussion about coercion and pressure.

[Dr Tidball]

I am delighted that the right hon. Gentleman has made that point. Inserting the amendment—and the language of, and focus on, “benefit”—in a paragraph that deals with the two criminal concepts of coercion and pressure, actually undermines the existing focus of the paragraph. Does he agree that it is better and stronger to keep the focus on the two criminal concepts, which would require the mens rea—which I think some colleagues are indicating—and the actus reus, and that that is not achieved by inserting the language about benefits?

--- Later in debate ---

[Danny Kruger]

I am very conscious that people feel like a burden at the end of their life. It is quite right that at the moment the system says, “No, you are not. You have value. You might feel a burden, but we want to sustain your life until its natural end. If you want to withdraw or decline treatment, that is your autonomous choice, but we do not recognise you as a burden.” It is very important that the British state does not tell people or confirm to people that they are a burden, which is what we would do in the Bill.

To the point that the British people are very self-effacing, I should say that I suspect we would be at extreme risk from this law. I think many people would indeed feel like a burden. If we pass this law, we are explicitly saying, “Yes, you may well be a burden and it might well be right for you to seek an assisted death.” My right hon. Friend the Member for Braintree, who tabled the amendment, makes the powerful point that a right to die should not become a duty to die. Nobody wants that. Nevertheless, the implication of a law that confirms that people may seek to get the state’s help to kill themselves—not for their own sake but because they feel a burden to others—is incredibly dangerous for our society and for our culture. I would be very concerned if we proceeded with it.

I will now conclude on the amendment before quickly talking about pain. It addresses the motivation of doing things for one’s own sake. I do not underestimate the difficulties. My right hon. Friend the Member for North West Hampshire has stated a number of them at least, as have other Members.

Implementing this safeguard will be difficult, but the fact is that the Bill’s sponsors have already put enormous faith in doctors and judges, or other experts, to detect external coercion and make all sorts of judgments—to ferret around in people’s minds and in their lives to understand what they are doing. We have to consider how best to implement this safeguard, but at the moment the Bill does not even say that asking for an assisted death for other people is something that should be protected against. That is wrong, and it is right that we make the amendment.

I will proceed quickly to a few points about the amendments in the name of my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson), which specify that the purpose of seeking an assisted death must be the avoidance of pain. They would make the Bill honest. The point has been made repeatedly by advocates in the media and in Parliament, including in our evidence sessions, that the reason why we need an assisted dying law is that so many people die terribly. My right hon. Friend the Member for North West Hampshire has referred to some of that today, and he did so very powerfully on Second Reading too.

Sir Nicholas Mostyn made a fairly unarguable case that if we are honest about what we are trying to do here, it is unclear why we have a period of prognosis as a qualifying factor: why should people have to be within six months of their death in order to qualify if we are concerned about the avoidance of suffering? If the logic of the Bill’s proponents and the argument for it is followed through, of course it should be only about the avoidance of pain. I recognise that “suffering” is a more complicated word, but I do not agree with my right hon. Friend that pain is too difficult to determine. The motivation of avoiding pain is straightforward. It should be simply about pain, and unless someone is a full-blown ethical egoist who believes there should be no restrictions on someone seeking the assistance of others to take their life—

[Dr Tidball]

The hon. Gentleman may remember the speech that I made in the Chamber about my own experience of extreme physical pain, and indeed extreme physical suffering, as a child. The level of morphine that I needed was so high that my skin began to itch. I would not have voted for the Bill to proceed to Committee if it had been based on suffering. I voted for it because it was defined very tightly around the language of terminal illness. With the greatest respect to the hon. Gentleman, I think he undermines that case by arguing that we should move to the extremis and focus on pain. We all want to ensure that the Bill gives people the choice to seek assistance with six months’ terminality, set among other choices, including the ability to palliate and achieve other support at the end of life. I am afraid that the amendments would undermine that and, for the reasons that I set out on Second Reading and have just highlighted, I do not support them.

[Danny Kruger]

I remember the hon. Lady’s very powerful speech on Second Reading and I fully recognise that, which is why I said that I recognise that including suffering would be problematic. I understand her point about pain as well. I think we need belt and braces. If we are going to do this, we should have strict restrictions on prognosis, because I want to restrict the time limit. I could go further than six months; we keep hearing about people in the very last stages of their life, and I think it should be restricted to them, but I also think the purpose of seeking an assisted death should be consistent with all the arguments that we keep hearing about people suffering terribly at the end from an agonising death, and we need to restrict it to those cases as well. It should be for people at the very end of their life, for the avoidance of suffering terrible pain. Those are the reasons that the public, in so far as they do support the Bill, support it—they support it for those reasons only.

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

Marie Tidball Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Stephen Kinnock]

The right hon. Member makes an excellent point. I think it goes back to our basic view that there are some amazing health professionals in our healthcare system who do fantastic work. Eating disorders are a truly tragic condition and, of course, there is all sorts of support in place. It is not always perfect or exactly how we would want it to be, but I think it would be a false move for the Committee to think that this is an either/or situation. This is a both/and situation. Of course it is not always perfect, but I think we should pay tribute to our amazing health professionals, who look after all sorts of people with all sorts of conditions, including eating disorders.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Does the Minister agree that the language of clause 2(1)(a)—

“cannot be reversed by treatment”—

is reassuring? Indeed, the written evidence from Professor Emily Jackson notes:

“Someone with a condition that is not inevitably progressive, or which could be reversed by treatment, would be ineligible under the Act.”

That covers the case raised by my hon. Friend the Member for Ipswich.

[Stephen Kinnock]

My hon. Friend makes an excellent point. She brings us back to the fundamental point made in the Bill, which is that it has to be “an inevitably progressive illness”. Eating disorders do not fall under that definition: that is very clear. I hope that that explanation and the observation that I have made on the other amendments are helpful to members of the Committee in their consideration.

--- Later in debate ---

[Danny Kruger]

I am delighted to hear it. I am grateful to the hon. Lady and to other hon. Members who have indicated their sympathy for the amendment. I look forward to the Division and to the Minister’s decision.

May I follow up on a point made by the hon. Member for Bradford West? I do not know whether the hon. Member for Spen Valley would like to intervene to help me understand the point. Amendment 181 would redraft clause 3(2) to make it clear that a person does not qualify as terminally ill

“only because they are a person with a disability or mental disorder”.

It would add to clause 3(2) the following additional sentence:

“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if…the person meets the conditions in paragraphs (a) and (b)”.

Does the hon. Member for Spen Valley agree that that will essentially mean that the clause does nothing? It confirms the terms of eligibility set out earlier in the Bill, and confirms that a person would still be eligible to receive an assisted death if they had conditions that were a consequence of a mental disorder or a disability. If she feels like intervening on me, I would like her to help me understand what that additional sentence adds. To my mind, it negates the purpose of the clause.

[Dr Tidball]

I stand here as a disabled woman. Under the Bill, as a disabled woman, I would not —by reason only of being a disabled woman—be eligible to have access to assisted dying. The amendment clarifies that I would not be eligible only through being a woman who has a disability. However, if I develop a condition that means that I have a terminal illness, leaving me with only six months left to live, I would be permitted to have that choice. It is right, I think, that I should have that choice. As I said in my Second Reading speech, this is about giving people access to a good death and living a good death. This is about giving that choice, where they choose to make it, to disabled people, while building in sufficient safeguards so that this is not something pressed upon them—

[The Chair]

Order. I do not like to intervene when a debate is going on, but as I indicated earlier, Members’ interventions have to be just that: interventions, not mini-speeches or disquisitions. Can we please keep interventions short and precise?

--- Later in debate ---

“The choice of assisted dying as one option for adults when facing six months’ terminal illness must be set alongside the choice of receiving the best possible palliative and end of life care, or it is no choice at all.”—[Official Report, 29 November 2024; Vol. 757, c. 1052.]

[Dr Tidball]

Just to clarify, I will not be supporting that amendment.

[Naz Shah]

I agree very strongly with the sentiments expressed by my hon. Friends the Members for Spen Valley and for Penistone and Stocksbridge, and I hope that the Committee can later return to the state of palliative care in this country.

I underline that the matter of the six-month prognosis was not some minor detail on Second Reading; rather, it was a central plank of the arguments made by those who said that we should pass the Bill because its safeguards were the toughest of any assisted dying law in the world. It is less than three months since my hon. Friends spoke those words, and yet we are already discussing an amendment that would remove the six-month prognosis.

--- Later in debate ---

[Lewis Atkinson]

That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.

Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.

I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.

[Dr Tidball]

My hon. Friend is correct in his interpretation of the judgments in those cases, but does he agree that the evidence given by Chris Whitty to clarify his statement was helpful in clarifying that the application of the test for capacity is heavily orientated towards the gravity and complexity of the decisions to be made? That is also underpinned, as my hon. Friend underlined, by the amendment tabled by my hon. Friend the Member for Spen Valley.

[Lewis Atkinson]

I do, and I thank my hon. Friend for bringing my attention to that; I was struggling to put my hands on it.

In my view, clause 2 does a difficult job very well in tightly drawing eligibility criteria so that the Bill does what it says on the face of it—that it allows access for terminally ill adults, at the end of their life. By having a six-month prognosis, rather than anything else, it allows individuals to put their lives in order and have the best last months of their lives possible. I therefore speak against the amendments and in favour of the clause as drafted.

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

Marie Tidball Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Stephen Kinnock]

It is the Government’s view that, even though the Bill is introducing something new, introducing new and potentially parallel legal frameworks would not improve its clarity or workability. In essence, the Government’s view is that we bring forward legislation; if that legislation passes, we bring forward regulations; and we then bring forward training and capacity-building to ensure that we ultimately have a system that is operational.

The Government do not accept the argument that bringing forward a new parallel framework of legislation at the first step would improve the workability and operationalisation of the Bill. My role as Minister on this Committee is to talk about the fact that the Bill needs to be workable, operational and legally watertight. The Government’s general view is that if we have a legislative base that, in our view, works—namely, the Mental Capacity Act 2005—we should not add more complexity into it.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

To build on the points the hon. Members for Reigate and for East Wiltshire were trying to make, does the Minister agree that a reasonable person on the street would believe that the act of disconnecting a respirator was a positive act? Currently, the Mental Capacity Act is applied to that act in relation to decision making; that is therefore analogous to the process for which it will be used in relation to this Bill.

--- Later in debate ---

[The Chair]

I call Marie Tidball.

[Dr Tidball]

I am sorry, Mrs Harris, but I may have risen too soon. I want to speak to amendment 339, but I would first like to hear from my hon. Friend the Member for Bexleyheath and Crayford, who tabled it.

[Danny Kruger]

I rise to speak to new clause 6, in the name of my hon. Friend the Member for Solihull West and Shirley; to amendment 368, in the name of my right hon. Friend the Member for East Hampshire; to amendment 270, in the name of my right hon. Friend the Member for South West Wiltshire (Dr Murrison); and to amendment 278, in the name of the hon. Member for Wells and Mendip Hills. I will canter through them as quickly as I can.

My concern about new clause 6, which specifies that an advance directive would be inapplicable in the case of assisted dying, is that, as we discussed briefly at a previous sitting, advance directives are currently about the refusal of treatment. That is what they exist to do. Under the new clause, as in the Mental Capacity Act 2005, the effect of an advance decision would be that

“the specified treatment is not to be carried out or continued”.

However, under clause 18, the doctor must be satisfied at the time that the lethal substance is provided that the patient has capacity. I do not think that the new clause is necessary; it is otiose or even nonsensical, because the Bill already assumes that the patient has capacity at the very end. [Interruption.] The hon. Member for Spen Valley agrees with that point. I invite my hon. Friend the Member for Solihull West and Shirley to consider whether he wants to press new clause 6 at all.

On amendment 368, which relates to people with Down’s syndrome, I hear what my right hon. Friend the Member for North West Hampshire says. I strongly agree with him; I will make a couple of points and then respond to his suggestion.

I look forward to the points from the hon. Member for Spen Valley. I do not say this in a carping spirit, but it is relevant that the National Down Syndrome Policy Group opened its submission with a series of complaints about the process. The group feels that the consultation process has been rushed: we have not had the usual 12 to 16-week public consultation. It talks about limited professional and affected population engagement in the course of the drafting of the Bill, and a lack of accessible consultation materials; I mention that not to revisit the debate that we had about the process, but because it is a bad start. In the group’s mind, it is a harbinger of how the Bill might operate, and I understand why it thinks that.

The fact is that in our society we have persistent and entrenched discrimination against people with learning disabilities, particularly people with Down’s syndrome. There is a fundamental assumption that is too widely shared that the lives of people with Down’s are worth less than others’. One sees that, I am afraid to say, in the prevalence of prenatal screening and termination of Down’s babies. Yet we know from research that the lives of people with Down’s are as fulfilling, joyful, positive and constructive as everybody else’s. The most marvellous fact is that 99% of people with Down’s syndrome say that they are happy with their life, which I am sure is more than on this Committee and probably more than in the general population.

As a society, we serially misunderstand and degrade the value of people with Down’s syndrome. They are victims of the system, particularly in healthcare. People with intellectual disabilities died at rates three to four times higher than the general population during the covid crisis, often with inappropriately applied “do not resuscitate” orders put on them. The representation from the National Down Syndrome Policy Group was signed by 50 organisations, all representing people with Down’s syndrome, so it is pretty widespread.

Expert advice is that it is very difficult to spot coercion when dealing with people with Down’s syndrome. It is very difficult to ensure that one is getting informed consent. A point that has been made, in particular by the Down’s Syndrome Research Foundation, is that a discussion with someone with Down’s can often feel to them as if a suggestion is being made. That is particularly relevant to the whole question of a doctor’s suggestion, which we will come on to—well, we are on it now. Certainly the whole matter of how a person with Down’s syndrome receives information needs to be taken into account in any work that is done.

--- Later in debate ---

[Danny Kruger]

I think my hon. Friend is suggesting that a doctor should suggest assisted dying as an option in every case, because if he is suggesting that a reasonable patient would want to know this towards the end of their life, he is saying that every dying patient should be told, “What about assisted dying?” That is a very concerning suggestion. The question is: how would a doctor decide when or when not to make this suggestion?

I will go back to Montgomery and make this point as clearly as I can. The Bill accepts that assisted dying is not an ordinary medical treatment, which is why I pressed the Minister on this question. Clause 4(1) disapplies the Montgomery case law, which requires, as part of informed consent, that the patient be informed of all appropriate options. Having conceded that assisted dying is not an ordinary medical treatment, the objection to a prohibition on doctors raising it makes little sense.

It is true that having such a prohibition would be unlike any other medical treatment, but the Bill has already crossed the Rubicon of saying that assisted dying is different from all other medical treatments, because in clause 4(1) it says that doctors are not obliged to offer it. It is either the case that they must offer it or they must not. There is no grey area. If they do not have to suggest it in any case, that implies that assisted dying is unnecessary in all cases and there no cases where it should be used. I would like to hear from any Member who has an answer to this: in what circumstances might it be appropriate for a doctor to suggest assisted dying?

[Dr Tidball]

Does the hon. Member therefore disagree with the British Medical Association, whose evidence to the Committee has said specifically:

“We support the Bill’s balanced position such that there is no prohibition on raising assisted dying with eligible patients where, in their professional judgement, the doctor considers this to be appropriate—but there is also no duty to raise it”.

The implication is that the Bill gets that balance correct.

[Danny Kruger]

I am grateful to the hon. Member for highlighting that. I disagree with the BMA—I think that its idea of balance is actually an incoherence in the Bill. I note that the BMA elsewhere has suggested that assisted dying should not be regarded as a normal healthcare option or treatment. It is itself a victim of the confusion that is reflected in the Bill about whether or not this is healthcare. As I said, the disapplication of Montgomery in clause 4(1) suggests that it is not actually healthcare treatment and should not be managed in the same way as everything else.

--- Later in debate ---

[Naz Shah]

My hon. Friend no doubt speaks from his experience of being a mental health nurse. I think there is space for that, and there are amendments that we will come on to when we talk about later parts of the Bill that deal with those initial conversations. I will be happy to address that issue then. I also welcome any more support that he can offer on those conversations based on his expertise.

As I was saying, in practical terms, we have evidence that in many cases, although not all, that desire will fall once a patient has had time to think through their diagnosis and once they have had good medical care for their illness or condition, and, in some cases, psychiatric support—a holistic package, perhaps even with social work intervention. Surely all Members would agree that we should give seriously ill people, who have just had such a shocking diagnosis and prognosis, time to think and to receive good medical care before they start the process of applying for assisted death. That surely applies to those of us who voted for the Bill on Second Reading every bit as much as those of us who voted against.

I will put it as plainly as I can: there is a significant risk from the Bill that people will be shocked by their initial diagnosis and prognosis, and, in that shocked state, will be more likely to apply for assisted dying. There is also evidence, however, that if they were to pause between the diagnosis and applying for assisted dying, they would be much less likely to have an increased desire to hasten death. This amendment would not be a perfect protection for people suffering from the shock of their initial diagnosis and prognosis, but it would be a clear safeguard that would protect many of them.

I want to make it clear that I was probably 60% against and 40% in favour of the Bill on Second Reading; I want to see a stronger Bill, with protections for the vulnerable. There is a significant group of vulnerable people who this Bill would put at increased risk—those who might take a decision to apply for assisted dying that, if they had had time to consider it and to receive medical and social care, many would not have taken. I ask hon. Members to support my amendment.

[Dr Tidball]

It is a pleasure to serve under your chairship, Mrs Harris. I will be supporting amendments 319 and 320 tabled by my hon. Friend the Member for Bexleyheath and Crayford. I am a great admirer of my hon. Friend’s work in championing people with learning disabilities, and his mission to give them a strong voice in this Bill. It is an area very close to my heart, having spent over a decade and a half working with people with learning disabilities and the advocacy organisations that support them.

I will, however, not be supporting my hon. Friend’s amendment 339, merely because I am drafting something to strengthen those measures even further. My amendments will go beyond amendment 339 and amend the code of practice so that seeking advocacy and access to an appropriate adult applies across the pathway to those seeking assistance, not merely in relation to the content of clause 4, as in that amendment.

I want to ensure that access to an independent advocate or appropriate adult is expanded to cover those with autism, a learning disability or a mental disorder, which is not currently covered by amendment 339. That will enable those people to engage with any of the provisions under this Bill through the support that they would receive from an independent advocate or appropriate adult.

As I say, I am also seeking to strengthen access to such advocacy across the pathway, through seeking assistance at each stage. I have huge respect for my hon. Friend, but I want to make sure that we specifically include the language of “mental disorder”, to make sure that that particular group of people with mental health problems is able to access independent advocates, as well as those with learning disabilities and autism.

I am also looking at whether we need a consequential amendment or new clause that would make the Secretary of State put in place provisions for regulations as to the appointment of persons as independent advocates in order to ensure that those seeking assistance under the legislation who have a learning disability, autism or a mental disorder can have proper access to such advocates. That would strengthen the resource provision and access for that group.

I have worked closely with Mencap on the amendments that I am drawing up and will continue to do so, and I would welcome input from my hon. Friend the Member for Bexleyheath and Crayford. Although I support his intent in principle, I will be tabling amendments to cover a broader group of individuals to access such appropriate adults and independent advocates, so that they can seek and access advocacy across the pathway and period of seeking assistance. My amendments would put access to appropriate adults and independent mental health advocates on a much firmer footing in the Bill.

[Sarah Olney (Richmond Park) (LD)]

I wish to speak briefly to amendment 270, in the name of the right hon. Member for South West Wiltshire, to which I have put my name. It is about the really important issue of assessing suicidal intent as part of the assessment as to whether somebody has capacity to seek an assisted death. It is a really important point. The Bill expressly sets out that the person seeking an assisted death should have

“a clear, settled and informed wish to end their own life,”.

Amendment 270 seeks to establish that the wish cannot be clear or settled if there is any doubt about whether the person has a suicidal intention instead of seeking an assisted death on the basis that they have a terminal illness. In its current form, the Bill does not require a structured assessment of whether a patient is experiencing remediable suicidal risk factors, such as treatable depression, external pressures or suicidal ideation, before assisted dying is discussed.

In the oral evidence, Dr Mulholland said that most people with depression, anxiety and other mental health problems “would have capacity” under the Mental Capacity Act because it would be presumed. It is not necessarily an obstruction to people being referred for anything. It is an important point that someone can have depression and that it can lead them to have suicidal thoughts, but under the Mental Capacity Act they would still be assessed as having capacity to decide that they wanted an assisted death.

What is really important is that we have, over some years in this country, developed a suicide prevention strategy. I am sure that every Member in this room has had constituents approach them, as I certainly have, about family members who have committed suicide, where they were able to identify factors that made that suicide preventable. That is why it is so important that the suicide prevention strategy has been developed and continues to be developed, and why leading figures associated with that strategy—and with suicide prevention more widely—are concerned that a Bill for assisted dying may undermine suicide prevention strategies. We should take every care to prevent that in this Bill.

The current UK suicide prevention strategy cites early intervention as a priority to implement tangible actions aiming to reduce the risk factors of suicide. In line with that strategy, amendment 270 provides early intervention that aims to identify the symptoms of suicidality in a patient before the initial discussion about assisted dying can take place. At the bare minimum, someone who is severely suicidal will not be allowed to enter into conversations about receiving an assisted death.

It is important to reflect that suicidal ideation is not the same as a settled wish to die. Evidence shows that when mental health issues are treated, many patients no longer seek to end their life by suicide. Dr Price, in the oral evidence, said that 20% of terminally ill patients experienced depression, which is strongly associated with the wish to hasten death. When depression is identified and treated, the wish to die often diminishes. It is so important to distinguish and make provision for those people who are experiencing a wish to die as suicidal ideation, as opposed to the

“clear, settled and informed wish”

specified in the Bill.

Research from the Office for National Statistics, King’s College London and the University of Manchester suggests that people diagnosed with a physical terminal illness are at an elevated risk of death by suicide, because of an increase in the psychological distress that can lead to severe depression in many patients, but data from the study shows that it is a more pronounced risk of suicide in the first six months after diagnosis or first treatment and, on average, suicide rates in the first year after a terminal diagnosis were 21.6%. Of course, it is important to reflect on the fact that a diagnosis of a terminal illness can take place some years in advance of the actual prognosis that the person’s death may occur. We are looking at a group of people who are within six months of their death as far as can be established by what is, as we know, uncertain prognosis—yet the incidence of suicide among those with a terminal illness is much more weighted towards those who have just received a diagnosis. These, of course, are not the same group of people; there may well be overlap, but they are definitively not the same.

Evidence on the gov.uk website suggests that

“over half of men aged 40 to 54 who died by suicide had a physical health condition.”

We know that having a physical health condition or any kind of terminal illness has an impact, and that evidence demonstrates the impact that poor physical health has on mental wellbeing. We know that thereDr Louis Appleby, a psychiatrist who leads the national suicide prevention strategy for England and directs the national confidential inquiry into suicide, has expressed concerns that the Bill fundamentally undermines the basis of the suicide prevention strategy. Identifying and diagnosing capacity and mental disorders are easy to put down in writing, but in practice it is much harder for professionals to make a correct judgment straightaway. Where we do not want someone to die, we intervene by offering mental health support, crisis services and what we hope is a comprehensive suicide prevention strategy, but for those who qualify under this Bill, instead of that suite of support, we allow them to progress straight into discussion to end their life.

It is really important that we have had a debate today about how the discussion should be initiated and the appropriate way to do that, but what is important about amendment 270 is that it takes into account the specific factor of suicidal ideation. It would mean that whatever the outcome of the decision about how the conversation should be initiated, the possibility that the person wishes to commit suicide is nevertheless taken into account.

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

Marie Tidball Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Naz Shah]

The hon. Member makes a valid point. That brings us to a very important question: do we wait for something to have happened? In this instance, people will have died.

If we were considering kidneys, for example, and the issue of consent, it would require somebody independent. It needs a specialist. We come back to the point about specialisms: whether they relate to diagnosis, coercion, the care pathway, palliative care or the drugs that bring a person’s life to an end, which we will discuss later, these are specialisms. I know that later my hon. Friend the Member for Spen Valley will speak to her amendment about the panel, which is intended to require expertise. That is what amendment 285 speaks to, and I hope hon. Members will support it.

Amendment 286 would set out the requirements for the co-ordinating doctor and ensure that the standards are upheld throughout the process of assessment, so that the patient and clinician have the highest levels of advice available. Even though the co-ordinating doctor might already have sought the advice of specialists as part of their assessment, the purpose of having an independent doctor is to assess the patient without preconceptions influenced by the co-ordinating doctor’s decision-making process. It is therefore important for the clinician to have access to the same level of advice to inform their clinical decision making.

In medical practice, should a second opinion be sought, the person providing that second opinion might consult a range of sources to establish an opinion. This measure would therefore be in line with normal medical practice. I hope that hon. Members will support the amendments.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

rose—

[The Chair]

Would you like to speak?

[Dr Tidball]

Yes. I did indicate that I would.

[The Chair]

It is helpful if you stand in your place.

[Dr Tidball]

I did earlier.

[The Chair]

I am sorry. I did not see you.

[Dr Tidball]

With respect, I stood earlier and your colleague acknowledged it.

[The Chair]

You should stand at every occasion. Anyhow, I call Marie Tidball.

[Dr Tidball]

I rise to speak in support of the hon. Member for Spen Valley. I thank her for driving amendment 183 forward and for taking on board my input and that of others on strengthening the language in the clause to include the amendment. I will set out why I support clause 4 overall, as augmented by the language in the hon. Lady’s amendment 183, along with amendment 275 from my hon. Friend the Member for Sunderland Central, and amendment 108.

To ensure that there is a compassionate choice at the end of life, it is right that the Bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards. In my speech on Second Reading, I said:

“The choice of assisted dying as one option for adults when facing six months’ terminal illness must be set alongside the choice of receiving the best possible palliative and end of life care, or it is no choice at all.

Having analysed the Bill closely, therefore, there are changes I would want to see in Committee to strengthen those options and ensure the way that choice is presented by medical practitioners is always in the round.”—[Official Report, 29 November 2024; Vol. 757, c. 1052.]

I am satisfied that the amendments from my hon. Friends the Members for Spen Valley and for Sunderland Central will strengthen the Bill in that way, ensuring that choice for those seeking assistance is more efficient and effectively presented in the round by medical practitioners.

Amendment 183, in the name of my hon. Friend the Member for Spen Valley, emphasises that the initial discussion under clause 4(3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4). It would ensure that the registered medical practitioner must explain to and discuss with the person their diagnosis and prognosis, any treatment available and its likely effect. Amendment 275, in the name of my hon. Friend the Member for Sunderland Central, would ensure that they also discussed “all available” palliative, hospice or other care, including symptom management and psychological support. I support amendments 183 and 275 because, having looked closely at barriers to access to healthcare for disabled people and others over the past 15 years, I believe in the need for transparency, accessibility and equality of choice of healthcare as a fundamental key principle.

The BMA’s written evidence, at paragraph 5.6, sets out its support for clause 4. In particular, it expounds on the principle that there should be no prohibition on a doctor initiating discussion with a patient about assisted dying. Doctors should be trusted to use their professional judgment to decide when and if discussion about assisted dying would be appropriate, taking their cue from the patient as they do on other issues. The BMA goes further, stating:

“Some patients find it difficult to bring up sensitive subjects in their consultations,”

Being able to have these discussions is necessary and helpful.

--- Later in debate ---

[Dr Tidball]

I will make progress.

Clause 4 creates no duty to raise assisted dying, a point supported by the BMA. Keeping things secret is not helpful for the patient making such difficult decisions about how best to live their death with dignity and respect.

[Naz Shah]

Will my hon. Friend give way?

[Dr Tidball]

I will make progress.

In reply to a question from me about those who are seeking assistance, Dr Jane Neerkin, a consultant physician in palliative medicine, said:

“For them, it is about trying to regain some of that control and autonomy and being able to voice for themselves what they want. That is what I tend to see that people want back at the end of life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 201, Q263.]

Importantly, amendments 183 and 275 would strengthen clause 4 to ensure that we avoid a situation that gives those with the most social capital more choice, while leaving those who might otherwise be unaware of all other options available to them without that choice. If the Bill is passed by Parliament without them, it will exacerbate health inequalities rather than abating them.

Together, the amendments expound and elaborate on the need for discussion of all appropriate palliative and other end-of-life options available to someone with a six-month terminal illness. I commend them to the Committee.

[Stephen Kinnock]

The amendments would make changes to the discussion between the medical practitioner and the patient. They are largely focused on clause 4, on the initial discussions, but several are thematically linked or related to later clauses.

Amendment 342 would impose a requirement on the registered medical practitioner to conduct a preliminary discussion with a person where that person has indicated that they wish to seek assistance to end their own life. As it stands, the Bill allows registered medical practitioners to opt out should they not wish to hold that conversation with someone, although they have an obligation under clause 4(5) to refer an individual to another medical practitioner for that discussion.

The amendment would remove that discretion and thus remove the opportunity for a medical professional to opt out of having the preliminary discussion. That may conflict with the principle set out in clause 23 that no registered medical practitioner or other healthcare professional is under any duty to participate in the provision of assistance. Our analysis suggests that in removing discretion as to participation, the amendment could interfere with an individual’s rights under article 9 of the European convention on human rights, on the freedom of thought, belief and religion, and article 14, on the prohibition of discrimination.

Amendment 285 would require the registered medical practitioner who conducts a preliminary discussion with a person on the subject of an assisted death to discuss with them, in consultation with a specialist, the person’s diagnosis and prognosis, any treatments available and their likely effects, and any available palliative, hospice or other care. The amendment would therefore require additional registered medical practitioners or other specialists to be consulted as part of the preliminary discussion under clause 4(4). The additional time required for consultation with specialists would be likely to lengthen the period over which a preliminary discussion can take place.

I also note that clause 9, “Doctors’ assessments: further provision”, will already require the assessing doctor to make such other inquiries as they consider appropriate in relation to the first and second assessments.

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

Marie Tidball Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I rise to speak to the amendments in my name—namely, new clause 12 and amendments 336, 337 and 335. Yesterday, we spoke about the evidence we received from the British Medical Association. I accept that there is some crossover between my amendments and the amendments of the Bill’s promoter, my hon. Friend the Member for Spen Valley, on training.

The British Medical Association stated, with regard to my amendments:

“We strongly urge MPs to support these amendments which would define the ‘training’ explicitly in the Bill as specialised training to provide assisted dying, undertaken by those who opt in…We have been vocal that the Bill should be based on an opt-in model…during the Committee’s oral evidence sessions. Reinforcing this, we believe NC12 and Amendments 335-337 would make two important aspects of this provision in the Bill clearer:

1. That providing assisted dying is not, and would not in the future, be expected of all doctors—the Bill’s current all-encompassing reference simply to ‘training’ does not preclude this training being prescribed as standard general medical training via the regulations, in which case it would apply to all doctors and make the opt-in redundant. Specifying that it is ‘specialised’ training on the face of the Bill, and making clear that there is no obligation on doctors to undergo the training, would safeguard the opt-in model in the Bill’s first principles.

2. That only those who undergo specialised, tailored training on assisted dying could provide the service – during the oral evidence sessions, there has been much discussion about the importance of specialised training for those who opt in to carry out the service. Specialised training for those providing the service is essential for doctors and provides additional protection and safeguards for patients—it should be explicitly referenced in the Bill.”

We heard in our oral evidence sessions from others, including Dr Ahmedzai, on the need for training. He said:

“I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 69, Q82.]

I now turn to two amendments in my name: amendment 340 and amendment (a) to amendment 186. Both amendments relate to training for those with learning disabilities and autism. We had a similar discussion on a previous clause, and I know that further amendments are likely to be tabled on the matter, but as I said yesterday, they are not currently on the amendment paper.

I heard and welcome what my hon. Friend the Member for Luton South and South Bedfordshire has said about amendment 20. Putting that training in the Bill is hugely important, and I believe the same is true in relation to training for those with learning disabilities and autism, as set out in to amendments 340 and amendment (a) to amendment 186, particularly given my concerns and those of others about whether we end up with clause 3 relating to the Mental Capacity Act 2005.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I thank my hon. Friend for his amendments, and I agree with their principle. My concern is that, again, people with mental disorders are left out. Does he agree that, if there were a way to amend the Bill later so that they could be incorporated in these proposals, that would be a positive step forward?

[Daniel Francis]

I would welcome that as a positive step forward—I think there is probably still some work to do in that regard. My hon. Friend and I will have conversations on the wording of that future amendment, but at the moment we are discussing the amendments that stand before us. Any future amendments that may be tabled are not for us currently to consider.

--- Later in debate ---

[Dr Tidball]

As my hon. Friend knows, I have a great deal of respect for him, so I gently say that if he brings forward similar amendments later in the Bill, I would be delighted to talk to him and I ask him to include mental disorders.

[Daniel Francis]

I hear that, and I think my hon. Friend and I are on the same page on many of these matters. I think there were some drafting issues when I discussed amendments with Mencap at an earlier stage.

I commend to the Committee the six amendments in my name in this group: new clause 12 and amendments 336, 337, 335, 340 and amendment (a) to amendment 186.

Terminally Ill Adults (End of Life) Bill (Twenty First sitting)

Marie Tidball Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Naz Shah]

I agree: there is not a judicial process, so to speak. There most definitely is not. As I make progress, I will outline my concerns about that very clearly.

Let us take the second point raised by Sir James. He asked who will go about

“testing and, if need be, challenging the evidence”?

New clause 21 finally gives the panel the power to call people to give evidence who are neither the applicant nor the doctor. New clause 21(4) says that the panel

“may hear from and may question any other person”

and

“may ask any person appearing to it to have relevant knowledge or experience to report to it on such matters relating to the person to whom the referral relates as it considers appropriate.”

I welcome that as a start, because it acknowledges that there will be cases in which people other than the applicant and the doctors have vital information. But that really should not be where we finish—not if we want a genuinely robust assisted dying Bill with strong safeguards for vulnerable people.

The ability of the panel to hear evidence from other parties would indeed be one step towards detecting whether people are, for example, being coerced towards an assisted death. That would be one step towards being able to detect whether people were choosing assisted death because of a lack of palliative care or social care. But how will the panels know which witnesses are most likely to have or be aware of the significant evidence they seek?

The panel members will have the statements by the applicant and the doctors, and they will have the answers to any questions they have of the applicant and the doctors. I ask Members to think through how certain it is that those sources alone will be enough to find all the people who might have significant knowledge of a person’s circumstances. I would argue that it will not be certain. Yes, in some cases there will be no hidden circumstances that a panel would hear of from a witness only if they were called, but in other cases there will be, and those circumstances are much more likely to occur in the cases of people who are coerced or who feel like a burden to their families. They will be more likely to occur for those who have poor mental health, who are isolated, or who lack the social care they need. The panels are not likely to find witnesses with relevant information if what they have to go on is the statement of witness evidence of a person who has, for example, been successfully and skilfully coerced.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

New clause 21(4)(e) says that the panel

“may ask any person appearing to it to have relevant knowledge or experience to report to it on such matters relating to the person to whom the referral relates as it considers appropriate.”

Does my hon. Friend not agree that the expertise of the three panel members, as set out in the new clause, will mean they will very much have the ability to identify, on the basis of that subsection, the kind of individuals and the knowledge required?

[Naz Shah]

As I have stated before—I will make reference to that very point later—I would argue the safeguards are just not robust enough.

There should be a mechanism for trained and experienced people to find witnesses who might have relevant information. This could relate to another criticism that Members have made of the panel system: there is no provision for the Official Solicitor to act on behalf of the applicant. Sir James Munby argues that we should strongly consider this, saying that

“there must be a rigorous procedure in every case for testing and if need be challenging the evidence, including an independent evidential investigation, perhaps by the Official Solicitor, of the kind discussed in Conway. There are two reasons why this is essential in every case…Without this, it will not be proper for a judge to be involved in the process as a member of the panel.”

He goes on to make it plain that by “judge” he means the legal member of the panel.

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

Marie Tidball Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Danny Kruger]

The hon. Lady must not apologise for intervening on me. I can hardly be one to object to people intervening. This is a very good forum for the kind of exchanges we are having, so I am very happy to take interventions. She is absolutely right that lots of evidence has been presented. I cite it myself all the time. Further evidence is coming in, and much of it is very critical of the new proposals. That is an absolutely fair point, but my point remains that we invited witnesses and had three days of evidence on a Bill whose core safeguard has now fundamentally changed—well, it has not changed yet, but I suspect it is about to.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I supported the Bill on Second Reading on the basis of the High Court proposal, but then read very closely the evidence from Justice Munby on the need for a strengthened evidentiary process so that this is not just a rubber-stamping exercise. He said, secondly, that it would be better to replace the High Court with another system because of the position that it would place judges in. Having listened to 50 witnesses, I am satisfied with this proposal; I was persuaded through this cross-party process, which is an incredible example of deliberative decision making. Does the hon. Gentleman agree that our ability to amend the Bill where the evidence shows that we must do so demonstrates the strength of this process, and has enabled us to produce something much better and more in alignment with public opinion?

[Danny Kruger]

I greatly respect the position that the hon. Lady has come to. She has been persuaded that this is an improvement on the Bill, and I respect that. I recognise that that is what the hon. Member for Spen Valley and others think, but I am afraid I do not accept that the process has been adequate. The hon. Member for Penistone and Stocksbridge cites Justice Munby and others who criticised the High Court proposals. I also have my criticisms of them—I think they were inadequate—but the response to that is not to scrap them all together, but to strengthen them, as Justice Munby suggested. The hon. Lady will know that Justice Munby is not supportive of the new proposals either; he thinks they also fail the essential test of being an effective safeguard. Nor does the new proposal—the panel—provide the opportunity for evidentiary investigation, which would indeed be appropriate if we were to have a proper safeguard at this stage. I respect the hon. Lady’s position, but I am not persuaded.

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

Marie Tidball Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Naz Shah]

I absolutely do not think that, because her abortion rights are set out in law. However, I also think that when that woman is going into a refuge, that refuge will make it clear that she may choose not to. It is about empowering both sides.

I am grateful for the right hon. Member’s intervention, but let us follow that argument. Let us say that somebody wants to pursue assisted death, and they want to go into a place, but they are informed that that organisation does not want to provide or has not signed up to providing an assisted death. It comes back to the issue that my hon. Friend the Member for Sunderland Central rightly raised, which is that people do not deliberately go out looking to offend people. If we were in that space—I cannot imagine being there, but I am trying to understand it—would we want to access that service, because its religious belief differs from assisted dying as a principle?

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Just so I am clear, if a young woman is escaping domestic abuse and goes to a domestic violence space close to her home so that her children can carry on going to school, but finds out once she is there that she is pregnant by the abuser, does my hon. Friend think that that is acceptable?

[Naz Shah]

Sorry, do I think which bit is acceptable?

[Dr Tidball]

That the domestic violence protection centre or home can refuse to let that lady stay there because she has latterly discovered that she is pregnant as a result of the abuse and wants to seek an abortion.

[Naz Shah]

Absolutely not. I would be horrified if that were the case. I know we have had cutbacks and we do not have the access, but I cannot imagine any refuge of any religious belief in this country turning away a woman in the situation that my hon. Friend describes.

[Dr Tidball]

I am glad to hear my hon. Friend’s answer. I ask that question because I can imagine an analogous situation of a woman suffering from breast cancer who is allergic to opioids but does not know that when she enters the care home. If her cancer reaches a stage of terminality but she cannot pursue palliative options because of her allergy to opioids, assisted dying would be the only option for her to die with dignity and not in great discomfort. Under my hon. Friend’s scenario, that woman would not be able to pursue an assisted death in that care home.

[Naz Shah]

My hon. Friend makes a really important point, and I absolutely hear what she is saying. If the woman were going into that hospice or care home when she was pursuing an assisted death, I am not sure how that would work.

[Dr Tidball]

To clarify, in my very clear example—it is a real-life example that reflects the experiences of someone who attended this Committee yesterday—the person has a terminal condition and enters a care home that makes her comfortable and is near her family, but discovers while the hospice or care home is trying to find methods to palliate that she is allergic to opioids and therefore her condition cannot be palliated. In the hon. Lady’s scenario, she would not be able to choose assisted death because that care home has a blanket policy against it. That would discriminate against that young woman, who has an allergy to opioids that means that she cannot be palliated.

[Naz Shah]

I thank my hon. Friend for her intervention, which gives me a lot to think about. That is why I said that I genuinely do not have the answers. I want to have this discussion so that I can make the choice whether to support the amendments. I want to explore this issue further, because it is really important.

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

Marie Tidball Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Sarah Olney]

I want to make a couple of further points in response to some of the those raised by Members. First, I have looked at amendment 500, which the hon. Member for Spen Valley directed me to, and I thank the hon. Member for Reigate for showing it to me—her record keeping is much better than mine. I was going to say that amendment 500 does not cover a lot of the areas that I have raised, but the hon. Member for Spen Valley has just referred me to amendment 455.

However, it is important to say that amendment 455 refers only to “protected characteristics” under the Equality Act 2010. I specified particular characteristics in amendment 273 in response to some of the evidence that we received. In particular, I included the person’s age in response to evidence that we received from Together for Short Lives, which represents children’s hospices including Shooting Star in Richmond. It had specific concerns about the issue of assisted death being raised with young people under 18, and that is why I specified that. I also included gender and ethnicity, which I mentioned earlier, and that came through very strongly in a lot of the oral evidence that we received.

To address the point made by the hon. Member for Sunderland Central, I did not hear sexuality being raised as a risk factor at any point. Obviously, members of the LGBTQ+ community experience a great deal of discrimination, but I have not heard it raised as a specific risk factor for assisted dying, which is why it is not on the list. I have included the person’s postcode because I do not know a better way of assessing whether someone is from a low-income background. I particularly draw the attention of hon. Member for Spen Valley to that characteristic, because it is obviously not protected under the Equality Act, so I remain really concerned.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

For the avoidance of doubt, socioeconomic status would have been a protected characteristic under the Equality Act, were it not for the previous Conservative Government.

[Sarah Olney]

I thank the hon. Lady for that useful intervention. As I say, socioeconomic status is not currently a protected characteristic under the Equality Act.

--- Later in debate ---

[Kim Leadbeater]

That is very helpful indeed. In that case I am very pleased to support amendment 523 in the name of the hon. Member for East Wiltshire as well. I am also minded to support amendment 394 in the name of my hon. Friend the Member for Bexleyheath and Crayford, which I think is very sensible, like his other amendments that I have supported. I am not sure that amendment 534 in the name of my hon. Friend the Member for Ipswich is entirely necessary, but I fully understand the sentiment and therefore I am minded to support that amendment as well.

That brings me on to the final amendment, 448. I wanted to support this amendment, but I have taken on board the Minister’s comments on the lack of clarity about what it means to be registered and qualified. As such, I cannot support that amendment this evening, but I think we could look at coming up with something on Report that would achieve the objective that my hon. Friend the Member for York Central intended.

Amendment 447 agreed to.

Amendment made: 394, in clause 30, page 18, line 24, at end insert—

“(ba) the provision of information and support to persons with learning disabilities who are eligible to request assistance to end their own life under this Act, including the role of advocates for such persons;”—(Daniel Francis.)

Amendment made: 416, in clause 30, page 18, line 25, leave out paragraph (c).—(Jack Abbott.)

This amendment is linked to Amendment 417.

Amendment made: 430, in clause 30, page 18, line 30, at end insert—

“(da) responding to unexpected complications that arise in relation to the administration of the approved substance under section 18, including when the procedure fails;”.—(Daniel Francis.)

[Dr Tidball]

I beg to move amendment 517, in clause 30, page 18, line 30, at end insert—

“(da) arrangements for a qualifying person requesting assistance to end their own life to receive the support of an independent advocate under section [Independent advocate].”

This amendment would add arrangements for a qualifying person to receive the support of an independent advocate (NC25) to the list of matters that codes of practice may be issued on.

[The Chair]

With this it will be convenient to discuss new clause 25—Independent advocate—

“(1) The Secretary of State must by regulations make provision as to the appointment of persons as independent advocates.

(2) The regulations may, in particular, provide—

(a) that a person may act as an independent advocate only in such circumstances, or only subject to such conditions, as may be specified in the regulations;

(b) for the appointment of a person as an independent advocate to be subject to approval in accordance with the regulations;

(c) persons that may appoint independent advocates;

(d) provision for payments to be made to, or in relation to, persons carrying out the function of an independent advocate under this section;

(e) training that such advocates must undertake before being appointable; and

(f) obligations on persons performing functions on this Act to ensure the presence of an independent advocate for a qualifying person.

(3) The role of independent advocates is to provide support and advocacy to a qualifying person who is seeking to understand options around end of life care, including the possibility of requesting assistance to end their own life, to enable them to effectively understand and engage with all the provisions of this Act.

(4) For the purposes of subsection (2) a person is a ‘Qualifying person’ if they—

(a) have—

(i) a learning disability;

(ii) a mental disorder under section 1 of the Mental Health Act 1983; or

(iii) autism; or

(b) they may experience substantial difficulty in understanding the processes or information relevant to those processes or communicating their views, wishes or feelings; or

(c) they meet criteria that the Secretary of State may specify by regulations.

(5) Regulations may not be made under this section unless a draft of the statutory instrument containing them has been laid before and approved by a resolution of each House of Parliament.”

This new clause would require the Secretary of State to, by regulations, make provision for independent advocates to provide assistance to qualifying persons.

[Dr Tidball]

It is a pleasure to serve under your chairship, Mrs Harris. I rise to speak to my new clause 25 and my related amendment 517. I note with pleasure that the Committee has agreed to amendment 447, which mandates the need for the code of practice. I also support amendment 394, tabled by my hon. Friend the Member for Bexleyheath and Crayford.

My new clause 25 would require the Secretary of State to make provision by regulations for independent advocates to provide assistance to qualifying persons under the Bill. Amendment 517 would add

“arrangements for a qualifying person…to receive the support of an independent advocate”

to the list of matters provided for by the codes of practice in clause 30.

The issue is deeply important to me. On Second Reading, I said:

“so often control is taken away from disabled people in all sorts of circumstances.

In order to ensure that there is compassionate choice at the end of life, it is right that the Bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards.”—[Official Report, 29 November 2024; Vol. 757, c.1052.]

Those safeguards must include strengthening the voices of disabled people, both in the Bill and in the monitoring of its impact on disabled people if it is ultimately enacted. I tabled new clause 25 and the related amendment 517 alongside my proposed new clause 27, which would mandate a disability programme board to strengthen disabled people’s voices, empowering and better enabling them to be treated with dignity and respect when they are a qualifying person seeking to understand their options around end-of-life care.

Subsection (3) of new clause 25 states:

“The role of independent advocates is to provide support and advocacy to a qualifying person who is seeking to understand options around end of life care, including the possibility of requesting assistance to end their own life, to enable them to effectively understand and engage with all the provisions of this Act.”

During one of the Committee’s oral evidence sessions, Professor Tom Shakespeare—the leading disability scholar and public policy expert—was asked which of the Bill’s measures could be strengthened to further protect disabled people. He said:

“We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c.144, Q181.]

My new clause responds to the evidence from witnesses during those sessions and augments proposals made by my hon. Friend the Member for Bexleyheath and Crayford. It extends those proposals in two ways. Under the new clause, “qualifying person” would include those with a learning disability, those with autism and, importantly, those who have a mental disorder under section 1 of the Mental Health Act 1983. It also extends the scope to cover those who, as set out in subsection (4),

“may experience substantial difficulty in understanding the processes or information relevant to those processes or communicating their views, wishes or feelings; or…meet criteria that the Secretary of State may specify by regulations.”

--- Later in debate ---

[Dr Tidball]

I take on board and appreciate my hon. Friend’s point. I hope he will agree that subsection (3) emphasises the purpose of the new clause, which is that it should apply across the spectrum of access to assistance and enable people to effectively understand and engage with all of the provisions in the Bill. I very much wanted to ensure that it would apply and be accessible at every stage.

[Daniel Francis]

My hon. Friend knows my concerns but she knows that I will be supporting the amendment this evening.

Advocates must have an understanding of the available end-of-life options and be able to communicate clearly and explain to patients the medical treatments available: palliative care, social care and assisted death. That is quite complex. As I have said previously, my own experience of mental capacity relates to my daughter: she would never have the capacity to be able to make such a decision. But on a daily basis, including this morning, I have to explain a two or three-point decision-making process. It is vital that advocates are there and that they have the training.

For many people such as my daughter, who is almost blind as well as being learning disabled, there are additional communication skills given that they have those extra sensory difficulties. It is vital for people such as Mrs Cook’s daughter, who might be vulnerable to influence, that the advocate must be able to explain all the options clearly without pressurising the person down one route. I believe the amendment will provide important support to those with less capacity or difficulty in understanding all the options in front of them.

As I have said, the two things that I have banged on about consistently in this process have been about learning disability and mental capacity. There has been a conflict for me, even with this amendment, but I am confident that the amendment tabled by my hon. Friend the Member for Penistone and Stocksbridge comes from a very good place. We will come to this next week but, like my hon. Friend, I have consistently listened to Mencap’s evidence, which also talked about reviewing the Bill at an earlier stage than is currently envisaged. That is why I have tabled amendments 493, 494 and 495 for next week.

My view is that if the Bill becomes law, the system will work well if the regulations are implemented correctly. I will support the amendment tabled by my hon. Friend the Member for Penistone and Stocksbridge; I thank her for bringing it forward. I know that my hon. Friend the Member for Spen Valley has listened hard, and I am grateful. I think there will be a degree of unanimity this evening.

[Danny Kruger]

I pay tribute to the hon. Member for Penistone and Stocksbridge for the amendments that she tabled and to the work that she has been doing on our Committee. I regret her victory over my friend, the former MP for Penistone and Stocksbridge, but the hon. Lady is bringing a lot to Parliament and to this Committee.

I am happy to follow the hon. Member for Bexleyheath and Crayford in supporting the amendments. I do not know whether the hon. Lady is in a position to respond with a further speech or by intervening, but I have some concerns about their operation. I recognise that the role of the independent advocate exists in our system already, very usefully and importantly: I see its value and appropriateness for an assisted dying regime. But if the amendments are accepted, we will be introducing the role of the independent advocate with the sombre recognition that it is necessary, in consequence of a Bill that will allow doctors to discuss ending the patient’s life as an option with anybody, no matter how well-equipped or ill-equipped that person may be to handle such a conversation on their own, and no matter how old they are—they could even be 18 years old. I support the amendments, but I do so in recognition of the very significant dangers that I think the Bill represents to all potential applicants.

I want to ask the hon. Member for Penistone and Stocksbridge, or perhaps the Minister or the Bill’s promoter, whether they feel that the amendments go to the heart of the concerns raised by the hon. Member for Bexleyheath and Crayford. I am pleased to hear that he is satisfied and will support the amendments, although I echo some of the suggestions of concern that he just made.

New clause 25 makes it clear that the advocate is there to provide support if the person

“is seeking to understand options around end of life care, including the possibility of requesting assistance to end their own life”.

Amendment 517 addresses the need for a code of practice when a qualifying person is requesting assistance to end their own life.

My question is whether the new clause and the amendment fully cater for a situation in which that individual is not requesting assistance to end their own life—when they are not seeking to explore that particular option. Given that we have retained the right of medical professionals to raise the possibility of assisted dying unprompted with patients, I am concerned about whether, as I think the hon. Member for Bexleyheath and Crayford implied, the medical professional initiates the conversation, or the advocate themselves is supportive of assisted dying and they deliberately or inadvertently have the effect of encouraging the patient to consider that option.

As I think the hon. Member for Penistone and Stocksbridge said in her intervention on the hon. Member for Bexleyheath and Crayford, new clause 25 creates the role of independent advocate to provide support to a patient, to help them to effectively understand and engage with all the provisions in the Bill. It does not specify that the advocate should be obliged, equipped or experienced in supporting the patient to engage with other options.

[Dr Tidball]

First, it is necessary that a patient should be able to engage with all the provisions in the Bill. The reason I did not support the previous amendments from my hon. Friend the Member for Bexleyheath and Crayford was that they would only have provided advocacy at too late a stage and would not effectively support a patient at that point we talked about in clause 4, which is around the moment of seeking assistance. I hope that answers the question.

[Danny Kruger]

I am grateful to the hon. Lady. That is very helpful. That is my concern: we need to ensure all necessary support for the patient at the earliest stage possible.

--- Later in debate ---

[Dr Tidball]

I should add that new clause 25(2)(e), on training, is central and will also assist in that respect. If the Chair will permit, that is why I talked about new clause 27, which builds in a strong structure that can reflect on how the provisions operate in practice.

[The Chair]

Order. The Member will have an opportunity to speak at the end of the debate. I call Danny Kruger.

--- Later in debate ---

[Kim Leadbeater]

My hon. Friend the hon. Member for Penistone and Stocksbridge has made a powerful and passionate case for the provision of independent advocates, and, as always, has done an outstanding job of advocating for people with disabilities, including learning disabilities, mental disorders and autism, as she has done throughout this entire process.

It is essential that anybody considering the choice at the end of life made possible by this Bill should fully understand the nature and consequences of any decision they may make. These amendments have made me reflect on comments—I think made by the hon. Member for East Wiltshire a few weeks ago—about the purpose of the Bill. He proposed that the Bill is either about choice and autonomy or it is about safeguards. Actually, this group presents very clear evidence that it is and must be about both, and I hope he can support the amendments.

I take on board the Minister’s comments. I heard an element of caution from him, and I am happy to work with the Government and my hon. Friend the Member for Penistone and Stocksbridge if there are any further requirements prior to Report stage, but I am very happy to support the amendment and the new clause.

[Dr Tidball]

I am grateful for the support of my hon. Friends the Members for Spen Valley and for Bexleyheath and Crayford. It sounds that I may also have the support of the hon. Member for East Wiltshire, which also makes me very happy at this stage of the evening!

I tabled these amendments because I passionately believe in inclusive healthcare for disabled people, removing barriers to such healthcare where possible, and ensuring that disabled people have a strong voice in advocating for themselves and the healthcare they need or desire. I have tried to write the amendment and the new clause to ensure that access to an independent advocate operates across the functions of the Bill. I have been keen to ensure that this provision acts in conjunction with new clause 27, which I will speak about at a later stage. I hope, as I said in an earlier response to the hon. Member for East Wiltshire, that that will provide a solid and robust opportunity to monitor the impact on disabled people of the Bill, if it does pass through Parliament, through its implementation and in practice. Taken together, the measures will create a solid foundation to enable disabled people to have a voice and will provide a strong structure for accountability in the Bill.

I acknowledge the Minister’s comments, and will work with him and my hon. Friend the Member for Spen Valley to ensure that it is watertight.

Amendment 517 agreed to.

Amendment made: 534, in clause 30, page 18, line 30, at end insert—

“(da) the forms of proof of identity that are acceptable for the purposes of section 6.”—(Jack Abbott.)

Amendment made: 523, in clause 30, page 18, line 31, leave out paragraph (e) and insert—

“(1A) The Secretary of State may issue one or more codes of codes of practice in connection with any matters relating to the operation of this Act not required under subsection (1) as the Secretary of State considers appropriate.”—(Danny Kruger.)

This amendment, which works together with Amendment 447, would clarify that the Secretary of State is not required to issue a code of practice under subsection (1)(e) but instead has the discretionary power to issue further codes of practice as the Secretary of State considers appropriate.

Amendment made: 417, in clause 30, page 18, line 32, at end insert—

“(1A) The Secretary of State must, within six months of the passing of this Act, issue one or more codes of practice in connection with the arrangements for ensuring effective communication in connection with the provision of assistance to persons in accordance with this Act, including the use of interpreters.”—(Jack Abbott.)

This amendment is linked to Amendment 416.

Amendments made: 216, in clause 30, page 18, line 37, leave out subsection (4).

See the statement for Amendment 188.

Amendment 217, in clause 30, page 18, line 38, leave out “that procedure” and insert “section 39”.—(Kim Leadbeater.)

See the statement for Amendment 188.

[Danny Kruger]

On a point of order, Mrs Harris. Before I move the next amendment, I wish to correct the record. I do not know if this is the moment to do so, but I wish to correct a mistake I made earlier today.

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

Marie Tidball Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

This amendment is consequential on NC14.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I beg to move amendment 518, in clause 40, page 23, line 24, at end insert—

“‘coercion’ means behaviour of a controlling or threatening character, including but not limited to emotional or financial control, or improper interference with another person’s decision-making autonomy, which is exerted by a person or organisation, with the intention of inducing that other person to make the relevant declarations or to self-administer an approved substance under this Act against that other person’s will (and ‘coerced’ is to be read accordingly);”.

This amendment provides a definition of coercion for the purposes of the Act. The terminology of “person” and “another person” reflects that used in clause 26.

[The Chair]

With this it will be convenient to discuss the following:

Amendment (b) to amendment 518, after “person or organisation,” insert

“including where the person is in an intimate or family relationship with that other person,”.

This would include the risk of coercion in intimate and family relationships in the definition provided by Amendment 518.

Amendment (a) to amendment 518, leave out

“, with the intention of inducing that other person to make the relevant declarations or to self-administer an approved substance under this Act against that other person’s will”.

Amendment 519, in clause 40, page 23, line 27, at end insert—

“‘dishonesty’ means not being truthful, or not acting in good faith;”.

This amendment provides a definition of dishonesty for the purposes of the Act. The terminology of “person” and “another person” reflects that used in clause 26.

Amendment 520, in clause 40, page 23, line 37, at end insert—

“‘pressure” means an act or acts, or communication, or behaviour, constituting an improper interference with another person’s decision-making autonomy, which is exerted by a person or organisation, with the intention of inducing that other person to make the relevant declarations or to self-administer an approved substance under this Act against that other person’s will.”

This amendment provides a definition of pressure for the purposes of the Act. The terminology of “person” and “another person” reflects that used in clause 26.

Amendment (b) to amendment 520, after “person or organisation,” insert

“including where the person is in an intimate or family relationship with that other person,”.

This would include the risk of pressure in intimate and family relationships in the definition provided by Amendment 520.

Amendment (a) to amendment 520, leave out

“, with the intention of inducing that other person to make the relevant declarations or to self-administer an approved substance under this Act against that other person’s will”.

[Dr Tidball]

It is a pleasure to serve under your chairship, Sir Roger. I rise to speak to amendments 518 to 520, which respectively provide definitions of coercion, dishonesty and pressure for the purposes of the Bill.

In my speech on Second Reading, I said I would want to ensure that the final stages of the Bill define dishonesty, coercion and pressure. I have sketched out the definitions based on oral evidence given to the Committee, and am grateful for the extremely helpful input from Laura Hoyano and Max Hill, after the witness sessions, in establishing the content and parameters of the definitions. We have spent a considerable amount of time in Committee discussing the safeguards against coercion, for example, but I felt we had not spent much time discussing the content and parameters of the concepts. Although I will not be press the amendments to a vote, for reasons I will outline, it is important to ensure that our discussions of the concepts are on the public record.

I will not press the amendments to a vote as I am convinced, after discussions with legal colleagues and having considered the issues very carefully, that the risks of setting the parameters on the face of the Bill are too great. It would risk ossifying the courts rather than ensuring that they use the full parameters of the concepts to encompass scenarios for the offences under clause 26 in circumstances that the Committee may not currently conceive of. In other words, I am convinced that to limit the definitions of the concepts in statute would create the risk of excluding criminal behaviour where the threshold of the offence would otherwise be met under common law.

I believe that instead, mirroring the approach to coercion taken in the Serious Crime Act 2015—a point I will return to—the Ministry of Justice must draw up details of the concepts and examples of their application in the context of the offences set out in clause 26. Doing so will be helpful for the medical practitioners, along with other professionals, who use the Bill if it becomes law, and in the training to be provided for them under the Bill to enable medical practitioners to evaluate whether each patient has been subjected to coercion, pressure or dishonesty by another person in applying for assisted dying.

In criminal law, definitions of coercion, dishonesty and pressure are not placed on a statutory footing. First, on dishonesty, Ivey v. Genting Casinos is the lead case because there is no statutory definition of dishonesty. The case provides not a definition but a two-stage test. The courts are familiar with the legal elements of dishonesty from case law: for a long time the part-subjective and part-objective Ghosh test was applied. That was amended in 2020 by the Supreme Court in the Ivey case, which disapproved the former test but retained the question: “Was his or her conduct dishonest by the standards of an ordinary decent person?”

Similarly, “pressure” does not have a statutory definition in criminal law, but essentially means forcing someone to do something against their will. Having looked at this issue carefully, I am satisfied that the wording in clause 26 is enough to signal to anyone involved in a relevant application to bring a criminal prosecution what they should look for in terms of acts and intent. The common law is thus well placed to further develop the concepts in the context of the offences set out in clause 26.

--- Later in debate ---

[Dr Tidball]

Clause 26 puts in place the elements of the offences under the Bill. It is right that it does that and draws the parameters very tightly and firmly. Under criminal law, those concepts are defined nowhere else on the face of a statute. My severe concern, having listened to the Committee and its worries about concepts such as coercion, is that we risk restricting our understanding of the concepts too tightly, and therefore excluding cases of the kinds that we want to include. By leaving them in the Bill but not defining them, we enable the common law courts to interpret the facts on the basis of the lives of the real people that come before them. I want to make sure that, where it is right and proper that those courts interpret the law on the basis of those facts, they are able to do so and are not restricted by too limited a definition in the Bill. I want to ensure that more, not fewer, cases can be encompassed.

As I said in my speech, we have talked about these concepts in quite an abstract sense. I wanted us to ground that in the reality of what we might want guidance and further advice on those concepts to look like. That would follow the convention, as I have said already, in other areas of the law, such as domestic abuse, where the primary legislation does not define the concepts but secondary legislation provides further details and real-life examples for practitioners and the courts.

[Naz Shah]

I thank my hon. Friend for her detailed explanation. She makes sense—I would not want to restrict that either. Perhaps she is entirely correct—no doubt she has researched it well—but clause 26 mentions coercion and pressure. It says all of that on the face of the Bill. My hon. Friend wants to leave it in that context—

“by dishonesty, coercion and pressure, induces another person to self-administer an approved substance”,

which is repeated in clause 26(1) and (2). I would still be minded to put at least something further in the Bill. I am not sure that it would restrict us; it would just be helpful. If my hon. Friend does not press the amendment to a vote, would the Ministers accept that there will be statutory guidance on that? I do not know whether the Ministers can respond now or want to wait until they sum up. I am happy to give way. They are not going to bite; that is fine.

Just for the record, I want to talk through the amendments tabled by my hon. Friend the Member for Lowestoft and why she and I feel that they are important. Amendment 518 would put in the Bill a definition of “coercion”. Amendment 520 would do the same for “pressure”. Those amendments give welcome clarity to the Bill on two important issues. Where they talk about a “person or organisation” engaging in coercion or pressure, respectively, my hon. Friend’s amendments would have added,

“including where the person is in an intimate or family relationship with that other person”.

That would make sure that we covered that.

[Dr Tidball]

I thank my hon. Friend for her speech. I think we are united in principle, but perhaps take different views on the best way to ensure that this happens in practice. To give an example, if the word “intimate” is used in those circumstances, were a court to interpret it, it might include a husband, wife or partner, but not a brother, sister or parent. So already, in using that one word, we have potentially created further risks. By defining it, in the circumstances set out by my hon. Friend the Member for Lowestoft, we are excluding a relationship that we would want the court to look at, to weigh and judge whether there was potential dishonesty, coercion or pressure by that person, in that relationship with the person seeking assistance. I give that as just one example of the risk created by adding language, rather than leaving it more broadly for a court to interpret on the basis of the facts of the case.

[Naz Shah]

I will re-read it. It is,

“including where the person is in an intimate or family relationship with that other person”.

The “family relationship”, I think, means that it is extended to siblings. That was my interpretation. Last week, or the week before, we spoke extensively about suicide, and women in particular. The number of women who have committed suicide, particularly following domestic violence, has increased. Indeed, it was on the front page of The Guardian today. It is defined by our lawmakers as intimate partner violence, but it could be other violence. In those cases, as a Government and as lawmakers, we do define those women who are killed by members of their family or intimate partners. Our Minister for Safeguarding and Violence Against Women and Girls reads out that list.

--- Later in debate ---

[Dr Tidball]

Alex Ruck Keene’s sage words to me were that the problem with putting in more words is that it creates an opportunity for lawyers to find loopholes. In the example that the hon. Lady has just given, when we are talking about family relationships, I think we would all agree that, having thoroughly considered the evidence in this Committee, we do not want any interpretation of the offences set out in section 26 to exclude, for example, carer relationships. That is not a family member, but a carer might give close personal care to someone with a terminal illness. We do not want the courts to think that it was the parliamentary intention of the Committee to delimit it to only intimate or family relationships. There is a risk that the more we narrow it by example, rather than leaving the term broad, as it is currently—“person”—we risk delimiting it too far. We do not want to exclude a situation involving an offence that we hope would be brought before the courts for prosecution.

[Naz Shah]

I thank my hon. Friend for her explanation, which was very good. I do not have time to go away and think more about it from a legal perspective, because I have only just heard her arguments, but at the moment I absolutely agree.

As for my hon. Friend the Member for Lowestoft, I thank her for her attempt to explain. She has years of experience of working in the field. She tabled that amendment in response to the amendment from my hon. Friend the Member for Penistone and Stocksbridge, with the best of intentions and to strengthen the legislation. I will look at it, and I may even return to it during the debate.

--- Later in debate ---

[Rebecca Paul]

It is a pleasure to serve under your chairmanship, Sir Roger. I rise to speak about amendments 518 and 520. As we have said, it is important that we understand what coercion means in a legal sense, and I am really grateful to the hon. Member for Penistone and Stocksbridge for trying to set that out, because it is not an easy task. Like her, I am concerned that defining it in this way may make it harder to prove coercion and may undermine the safeguards in the Bill.

Under the amendments, the assessing doctors and the panel are meant to look not just for evidence of coercion but for evidence of intent to induce assisted suicide, and they will have to show that the applicant is requesting assisted suicide against their will. That could make the law powerless against many kinds of behaviour that we want to prohibit.

To start with the point about intent, coercion and pressure take many forms, and they do not always involve a clear intent. Amendment (b) to amendment 518 and amendment (b) to amendment 520, in the name of the hon. Member for Lowestoft, very reasonably draw attention to family relationships. On Second Reading, the right hon. Member for Hackney North and Stoke Newington (Ms Abbott) said:

“people do not generally write letters to sick relatives urging them to consider assisted suicide and then put those letters on file. Coercion in the family context can be about not what you say but what you do not say—the long, meaningful pause.”—[Official Report, 29 November 2024; Vol. 757, c. 1030.]

But even in more blatant cases, we cannot necessarily prove intent directed towards assisted suicide. Sue Smith, a clinical psychologist, said in written evidence that coercive control often ramps up when the abused partner receives a cancer diagnosis:

“The seriousness of the cancer diagnosis may be systematically and actively denied or minimised, claims can be made by the male partner that she is attention seeking, or she is accused of making up the effects of treatment, and can be left isolated and alone when in physical need…a woman learns to doubt her reality and experience, and is extremely isolated. This can lead to heightened anxiety, hopelessness and helplessness, and abject despair, which can lead to a person wishing they were dead.”

That could be seen as coercion towards assisted suicide, but in that scenario does the abusive partner demonstrate clear intent? I am not sure the doctor or panel could demonstrate that in that instance, especially as they need to be satisfied only on the balance of probabilities that there is no coercion. If the panel think that there is a 45% chance that there is intent, but no more than that, they have to grant the application.

The harrowing story of Ryan Wellings and Kiena Dawes shows that even when coercion can be proved, proving that an abuser intends someone else’s suicide is a completely different matter. After Kiena Dawes took her own life, Wellings was convicted of coercive control and assault. The judge told him:

“from May 2020 until her death you abused, assaulted, exploited, controlled and demeaned her. When she died it is clear that she had begun to believe your lies to the effect that she was deranged, physically disgusting, friendless, worthless and an unfit mother. You had persuaded her that she had no one to turn to.”

Before her death, Dawes wrote a note saying, “Ryan Wellings killed me.” Although he was convicted on other counts, Wellings was acquitted of manslaughter. That demonstrates that coercive control, even if it is followed by suicide, does not always mean that intent can be demonstrated. It is really tricky.

Similarly, people may pressurise a relative without intending to override their will. The barrister Ruth Hughes KC, who has been quoted before, said:

“It is surprisingly easy for a relative, whilst completing a variation on ‘the classic asset strip’, to persuade themselves that they are actually acting in their aunt Dorothy’s best interests or in accordance with her wishes”.

In other words, someone can pressurise a relative into assisted suicide without intending to. Again, including intent here could actually muddy the waters.

I have a similar concern about the phrase

“against that other person’s will”.

That sounds very straightforward, but in practice it can be much less clear. Part of the effect of coercion is that people lose confidence in their own will and adopt that of others. In written evidence, many frontline workers pointed out that coercion does not always clearly appear as someone acting against their will. Janet Reiss, a specialist doctor in palliative care in Wolverhampton, says patients will not

“even necessarily be aware of being coerced”.

Dr Jennifer Hardes Dvorak, a senior lecturer at Canterbury Christ Church University specialising in medical law, states that the Bill

“does not consider how people internalise feelings of coercion and…act on this.”

If someone has internalised a feeling that they would be better off dead, that may be their will, even if we hope we could change it.

Anni Donaldson, a domestic abuse expert at the University of Strathclyde, said:

“Decades of work examining the impact of coercive and controlling behaviour has shown that ‘coercive control’ is not merely persuasion, but a complete change in the perspective of the victim so that she truly believes that she is worthless, a burden to her partner or wider family, and would not be missed should she die…Women are regularly humiliated, demeaned, and told they would be ‘better off dead’, or, that they are a ‘useless mother’, or that the children would be better off without them. This abuse erodes women’s confidence, autonomy, and self-esteem. Cut off from support, women often come to believe these lies, fearing reprisals from their partner if they report the abuse, many choose to tell no one. This long term, relentless, dehumanising process can result in a woman believing that she is ‘disposable’.”

Similarly, the writer and campaigner Sarah Ditum warns that the Bill may not protect

“the patient who, through lengthy cruelty and coercion from a partner or carer, becomes genuinely convinced that she (or sometimes he) is a burden who would be better off dead. Such a person may even refuse treatment, causing a curable disease to become terminal and placing them within the purview of the bill.”

So we might not believe that assisted suicide is in someone’s best interests, but there is no best interest test in the Bill or the amendments—just a reference to the person’s will. If a victim of coercive control truly believes they ought to die, it is not clear how the doctor or the panel can refuse their application, unless coercion can actually be proved, and proving it is not always easy, as we have just discussed.

My hon. Friend the Member for East Wiltshire has tabled amendments to remove the phrase

“against that other person’s will”.

Obviously, that is all academic now, as we are not pressing the amendment to a vote, but I would support doing that, because that phrase does more to narrow the definition than anything else.

On another point, amendments 518 and 520 refer to pressure and coercion from organisations. I do not know exactly what the hon. Member for Penistone and Stocksbridge has in mind with that. I guess an example might be the cases we have heard about in other jurisdictions where a health insurer or provider tells someone that they cannot fund a treatment but can fund assisted dying options. It could be that the hon. Lady had other things in mind there. That would possibly count as pressure under some circumstances, but it would be very hard to show that there was intent on the part of the organisation. It is not clear that the amendments help us to identify and avoid coercion and pressure in that sense.

Before I finish, I would like to point out something else that might be missing from the amendments: it is my favourite topic, the question of undue influence—my apologies to the Justice Minister, because I know we have gone over it a few times.

[Dr Tidball]

Just to put this one to bed, which is where we all need to go at this stage, I did seek advice from those that have worked in this field, and it is not a concept used commonly in the criminal law. It is instead used in the law of equity and would not be as relevant in this context. There were other, sharper elements that could make up this concept of coercion that were better and more well understood in the context of the criminal law.

[Rebecca Paul]

I thank the hon. Lady for that clarification of the information she has been given.

We have gone over the question of undue influence a few times. I promise I will not talk about it for much longer, but it is relevant, which is why I keep raising it. In a judgment that my hon. Friend the Member for Solihull West and Shirley has previously mentioned, Lord Nicholls said that undue influence includes two things. The first is

“overt acts of improper pressure or coercion”.

The second is a kind of influence that

“arises out of a relationship between two persons where one has acquired over another a measure of influence, or ascendancy, of which the ascendant person then takes unfair advantage...The influence one person has over another provides scope for misuse without any specific overt acts of persuasion. The relationship between two individuals may be such that, without more, one of them is disposed to agree a course of action proposed by the other.”

That definition suggests something broader than what is described in amendments 518 and 520, but I take the point that the hon. Member for Penistone and Stocksbridge has just clarified. The amendments suggest that somebody will actively interfere with someone else’s “decision-making autonomy” and have an intention to induce them to do something. But Lord Nicolls’s definition of undue influence is much less dramatic; it just identifies a relationship where one person’s view holds a lot of sway. For the last time—I promise—I would be grateful for the Minister’s view on that. I am sure she will talk through that point and advise on the clarification the hon. Lady has just given.

In conclusion, the amendments are completely well intended. It is helpful that the hon. Lady tabled them and that we have had this debate, and I am grateful to her for that. However, I am inclined to think that they would narrow the definition too much. My preference would be to remain with what we have, subject to the points I have raised many times on undue influence.

[Dr Tidball]

Does the hon. Member agree that it is helpful to have it on record that we have evaluated these concepts from all sides, but determined that putting them in the Bill is not the right thing to do and would be too restrictive at this point?

[Rebecca Paul]

I would not choose to have this specific definition in the Bill. There may well be another definition that I would be more comfortable with, so I cannot rule that out. However, I completely agree with the hon. Lady that this has been a helpful debate, and I really appreciate her tabling the amendments so that we could have it.

--- Later in debate ---

[Kim Leadbeater]

It is fair to say that we have had a very valuable discussion on the matters relating to these amendments. I thank my hon. Friend the Member for Penistone and Stocksbridge for the considerable amount of hard work that she has put into researching these issues. As always, her approach has been extremely thorough and diligent.

I have been on my own journey regarding the need or otherwise to place definitions in the Bill, but having undertaken the valuable discussions we have had through this Committee—I think this genuinely has been the Committee at its best—along with the expert legal input and advice that my hon. Friend and the Committee have had, I think we are in the right place to enable the courts to ensure that the law is as expansive as possible and to ensure that we do not create a scenario in which certain behaviours from those with mal-intent in relation to the Bill are excluded from its scope. I agree that we should allow the courts to do their job with the broadest possible powers to prosecute offences under the Bill. I echo my hon. Friend’s comments to the Minister about the need for the inclusion of details about these issues in guidance and codes of practice, but I thank the Committee for an extremely useful and productive discussion.

[Dr Tidball]

I am grateful for the thorough and thoughtful discussion that we have had from Members on both sides of the Committee Room. I am pleased and reassured that we have that discussion on record, so that those looking at the work that we have done in this Committee will understand the depths and levels at which we have thought about these important concepts in this space and the extent to which we have challenged and checked Ministers in making sure that they understand our concern about these provisions being properly put in place. I also thank my hon. Friend the Member for Lowestoft for her important input, which I hope will be reflected in the training.

I am glad that we have come this far and that we have a level of unanimity across both sides of the Committee Room. That is a nice point to reach as the Committee comes towards the end of its journey, and it reflects the essence and the intention that were so evident on Second Reading. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

[Kim Leadbeater]

I beg to move amendment 392, in clause 40, page 23, line 27, at end insert—

“‘first assessment’ has the same meaning as in section 7;

‘first declaration’ has the same meaning as in section 5;”.

This is a drafting change.

--- Later in debate ---

Brought up, and read the First time.

[Dr Tidball]

I beg to move, That the clause be read a Second time.

This is the final new clause of the Committee. As I said in support of new clause 25 and associated amendments last week, I want to strengthen the voice of disabled people in the Bill. New clause 35 would require the voluntary assisted dying commissioner to establish a disability advisory board that would report annually on the implementation and impact of the Act on disabled people. The new clause has been designed to ensure that disabled people have a voice at the heart of the Bill and an ongoing role in monitoring its impact.

The disability advisory board model reflects a structure that was used at the Department of Health to implement the Autism Act 2009 and monitor the implementation of its provisions, statutory guidance and strategy. It was a highly effective body. Including a disability advisory board structure on the face of the Bill would entrench the board in the work of the commission, enabling a long-term and iterative structure in which disabled people could report on the reality of the impact of the Bill on disabled people across this country.

This reflects comments made by Dan Scorer of Mencap in oral evidence. He said that if the Bill was passed,

“We would want to see strong representation from patient groups…as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280-81, Q367.]

The board must therefore consist of

“(a) people who have a disability under the Equality Act 2010,

(b) representatives from disabled people’s organisations, and

(c) other such persons or organisations as the Commissioner considers relevant to the impact of the Act on disabled people.”

The commissioner would, within six months of being appointed, have to appoint a programme board to advise on the implementation of the Bill, and annually thereafter report on the impact of the Bill’s operation on disabled people.

The clause reflects the learning of Dr Greg Mewett, the specialist palliative care physician from Australia who gave oral evidence to the Committee about the Australian implementation taskforce, which includes a strong disability advocate. My new clause would go further, by including a rigorous reporting process that requires the advisory board to report to the Secretary of State and the commissioner within six months of the commissioner being appointed, and annually thereafter. It also provides:

“The Secretary of State must, within three months of receipt of any report under subsection (3), lay the report before both Houses of Parliament.”

In the oral evidence sessions, I asked witnesses for their views on what structures or mechanisms could work to facilitate the opportunity to hear the voices of disabled people in monitoring the implementation and impact of the Bill were it to pass through Parliament. Dr Miro Griffiths said:

“I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services…I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 145, Q183.]

Subsection (2)(b) and (c) would provide for this.

Professor Tom Shakespeare corroborated the benefits of such an advisory board, calling it a “very good idea.” Importantly, Fazilet Hadi, from Disability Rights UK, stated:

“Should the Bill go through, it would be good to see a monitoring mechanism. I cannot say what that should be, but it would be good to see disabled people shape it. Some 45% of older people are disabled people, so disabled people are going to be very affected by the Bill.”

Poignantly, she went on:

“It is often our experience that we are the last people who are spoken to; maybe that is what is behind the question. We should of course be at the table now in respect of whatever mechanisms, and in the shaping of any implementation, should the Bill be passed.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 175, Q227.]

There is, and there should be, nothing about us without us.

As a disabled Member of Parliament, I am grateful to my hon. Friend the Member for Spen Valley for inviting me to sit on this Committee. Through this new clause and my earlier new clause 25, I have worked hard to put together a structure that ensures that disabled people are firmly at the table in the process of monitoring the implementation and impact of the Bill. I urge members of the Committee to support new clause 35.

[Jack Abbott]

At this point, I pay tribute to my hon. Friends the Members for Penistone and Stocksbridge and for Bexleyheath and Crayford. They have consistently tabled really important amendments that are very close to my heart, measurably improving the Bill.

I am briefly speaking in favour of new clause 35. We have had a number of good amendments about ensuring proper representation for vulnerable people during the process. We have also had a lot of discussion about the very important need to regularly monitor and report back on the Bill. This new clause brings all this together, ensuring that there is real oversight, with real thrust and a point to it. It is not good enough just to report back some statistics; the question is what we do with them. Having this sort of panel, with expertise and life experience, would be a significant step forward for people with disabilities, learning needs and anything else that might be included.

Once again, I pay tribute to my hon. Friends for this work. I am fully supportive of the new clause.