Marie Tidball MP: speeches

Speeches

• 12 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Tenth sitting) · Hansard source

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  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.

• 12 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Tenth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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—

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Ninth sitting) · Hansard source

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  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.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Ninth sitting) · Hansard source

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  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.

• 4 Feb 2025 · Topical Questions · Hansard source

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  T3. Stocksbridge Speciality Steels in my constituency has world-leading specialist capability to produce high-grade steel parts currently used in aerospace. I am proud of this Government’s steel strategy, which will ensure we buy British for new infrastructure, and Great British Energy provides an ambitious opportunity to bring down bills and ensure energy security. Will the Secretary of State meet me to discuss the potential for using specialist steel capacity at Liberty Steel in Stocksbridge for new, net zero energy infrastructure?

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

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  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?

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

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  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—

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

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  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.

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

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  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.

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

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  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.

• 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?