Marie Tidball MP: speeches

Speeches

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  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.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  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.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Sixth sitting) · Hansard source

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  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—

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  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?

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  That is very helpful; thank you.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  I have two follow-up questions on that basis.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  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.”

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  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.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  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.