Naz Shah MP: speeches

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Speeches

30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source
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Q Dr Richards, you were talking about elderly people in particular. We have heard evidence, particularly yesterday, about young women under 40 where terminal illness was deemed legislatively applicable to anorexia. It appears that that is quite a phenomenon. When we talk about the explicit conversation that you are suggesting, I would argue that it is not necessarily clear cut. Do you agree that there would be a risk there when it comes to people with anorexia? Dr Richards: I do not really understand why the case of terminal anorexia would be different to any other case in terms of the conversation. It would be necessary to have a very explicit conversation with somebody requesting assisted death; it does not matter what their illness is. On the issue of anorexia, the numbers are really tiny. In the Oregon model, which is what is in the Bill, you are talking about one or two people in the history of assisted dying. It is a very minor issue to get focused on. I have seen so much about this in the press and being discussed here. If you are very concerned about terminal anorexia, I am sure you could do some tinkering with the Bill so that people would not be eligible for assisted dying, but in terms of the empirical data in jurisdictions that have legalised the Oregon model, which is what this is, there are one or two cases. This should not be given a huge amount of time, because it is a distraction from the fact that really we are talking about a new mode of dying, which is a cultural response. Just as palliative care is a cultural response to suffering at the end of life, so is assisted dying. It is a different track; it is offering something different. Different types of people will want to go for that. It is a response to the protracted dying trajectory that we see now, which is new. In the history of human dying, we have never taken so long to die before. There has never been so much medical intervention at the end of life, and assisted dying is a cultural response to that. To get fixated on the two people with terminal anorexia who have accessed assisted dying in the States is a bit of a red herring.
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. I will get to where I need to get to, so bear with me. You talk about this being a very explicit conversation, but I would argue that that is not entirely true. We are talking about a set of doctors who will have opted in to have that conversation; not all doctors will do that. We have also had evidence from people suggesting that doctors and lots of other people would leave hospice care if assisted death was provided on the NHS. Yesterday, we had care providers telling us that if people engaged in providing voluntary assisted death, they would leave those hospices. So it is not quite as explicit as what you are suggesting, is it? Dr Richards: It would have to be. Those examples that you have just given would not mean that it was not an explicit conversation.
30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Sixth sitting) · Hansard source
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Q To follow up on that, there is no requirement that the doctor is present when the person self-administers the substance that leads to assisted dying. Am I correct? If that is the case, why does the law not make it necessary for the doctor to remain present until death, because at that point, the doctor would pick up any complications, would they not? Dr Furst: Every legislation within Australia is slightly different. For South Australia and Victoria, you are correct—well, there is pretty much no obligation all around Australia for a doctor to be present for self-administration. The reason for that is to give individuals autonomy over their death, and over the time and place of their choosing. We in South Australia do touch base with what we call the individual’s contact person to understand if there have been any complications and to check in after the death. A large number of our patients, though, will seek out support from a voluntary assisted dying nurse navigator, who is often present in the house just as a support person. We do also have a lot of feedback from them as to any complications, but the doctor often, or a nurse, will come at a later time to declare life extinct. The reasoning was that we did not think that there would be complications and we wanted to give people autonomy. We work on a permit system in a lot of jurisdictions in Australia, so people have a permit; they get given their substance and they can take their substance at a time of their choosing. They might have the substance in their house for weeks or months, potentially. Again, there is no obligation to follow through with taking that substance, which we also think is quite important. We know that in Australia, about 30% of patients who have a permit or who are approved for voluntary assisted dying actually decide that they do not want to consume the substance, but it is about giving them that choice and autonomy, and the strength to maybe pursue other lines of therapy.
30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Sixth sitting) · Hansard source
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Q We have had lots of witnesses testifying about gaps in palliative care and end-of-life care provision here in the UK. What is the current state of palliative care and end-of-life care provision in Western Australia, please? Dr Furst: I am in South Australia, but a recent survey by Palliative Care Australia surveyed over 900 palliative care specialists, and more than 80% of patients receiving voluntary assisted dying are actually getting combined palliative care and voluntary assisted dying. In our legislation in South Australia, there are key provisions for the monitoring of the funding to palliative care to ensure that no palliative care funding is diverted to voluntary assisted dying, but we feel very strongly that palliative care and voluntary assisted dying should go hand in hand. That is a feeling that is being seen around the country now. Palliative care physicians who are finishing off training now see voluntary assisted dying as part of their core business. It is no longer seen as something that should be provided by separate practitioners. It is really becoming quite integrated. Professor Blake: I am coming in from Western Australia. We were the second jurisdiction in Australia to introduce voluntary assisted dying laws. Ours have been operative since July 2021, so we have had the opportunity to collect quite a lot of data. Year on year, the number of people utilising voluntary assisted dying in Western Australia is increasing. In the year 2023-24, there were 292 deaths by voluntary assisted dying, which represented 1.6% of WA deaths. I agree with Chloe and confirm her view around the palliative care side of things: 83.8% of those persons who accessed voluntary assisted dying were also accessing palliative care.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source
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Q Finally, to Dr Mullock, you have said that in all jurisdictions that have legalised assisted dying, the only meaningful gatekeeping is done by medical professionals. We only have retrospective monitoring that is primarily reliant on honest reporting, particularly discovering whether, or how frequently, coercion or flawed assessment has led to inappropriate assisted dying, and therefore challenging it, so it is impossible to know how many people have been sacrificed with lawful AD regimes. We have witnesses who have said there is no evidence of coercion, especially in examples in Australia and some US states where some assisted dying schemes have been implemented. When they say that, do you think they are being accurate? Dr Mullock: I am sure they are being accurate in terms of the data before them. The problem is that it is difficult to know and, as Richard Robinson has pointed out, this is a hidden problem. In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, “This will be better for you,” and, “Have you considered this?” That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source
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Q Professor House, you have said that people applying for assisted dying may be in a state of vulnerability. What is vulnerability and how can the Bill be amended to make sure that vulnerable people do not inappropriately choose assisted dying? Professor House: Vulnerability is not just an inherent characteristic of individuals. It is the presence of these external factors, circumstances, and internal factors, state of mind, that influence and bias somebody’s thinking about whether their life is worth continuing with and whether they want to end their life. Its importance is that exploring those factors and considering what can be done to ameliorate them can lead to a change of mind. If we do not explore those factors and we do not attempt to ameliorate them, we are losing an opportunity to change the mind of people who may rethink their desire to end their life. Why I think of it as a vulnerability, rather than just as factors that influence a rational decision, which feels rather like how it is considered in the Bill, is that the emotional tone of the discussion that you have with people about all those factors is negative. 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. The worry is that because there is nothing in the current medical assessment that requires a careful exploration of these factors, there is really no opportunity to change them.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source
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Q Richard, thank you for coming in at such short notice. It is very much appreciated. Do you have concerns about whether the safeguards in the Bill adequately protect against coercion and vulnerability as Professor House has just described? Richard Robinson: Yes, we have concerns. I understand there is a potential amendment around ensuring that training and extra safeguarding elements are added to the Bill. We would be very supportive of that. As I have already said, while we have concerns, we also need to weigh that up around the notion that older people deserve the same kind of independence and autonomy as any other demographic. Therefore, the notion of vulnerability only extends to a proportion of those people who are older. Not all older people are vulnerable; it is important to say that. I have already said in an answer to another question that we are very concerned that the knowledge of even the notion of the abuse or coercion of older people is not widespread across the UK. If anything, that is getting worse rather than better, so this Bill really shines a light on a microcosm of society. We could be working together more adequately to ensure that older people are better represented, from an abuse and a coercion perspective, to ensure that any decision making is done within a safeguarding context. We are some way away from that at the moment.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source
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Q Fazilet, doctors are members of a caring profession, but there are ways in which—wittingly or unwittingly—they can end up coercing disabled people; there are reports of that. Would I be right in saying that? If so, how does this happen and how common is this experience for disabled people? Fazilet Hadi: Disabled people share their stories with us and other organisations. I am sure that doctors are a mixed bag, like all of us, but our experience of the NHS and of the medical profession is not wholly positive. We often find that doctors, because they cannot treat or cure us, do devalue our lives. We have had disabled people who have actually had it suggested to them or their families that their lives are expendable, when actually those people have got a lot of years to give. We also know that when you acquire disability, which most people do—most people are not born with one—it is absolutely frightening. I am sure that most of you would be absolutely frightened to be blind; it is not something you are going to die of, but you will have that fear, because you are not used to it. Whenever you acquire a disability or that disability gets worse, you will have fears, and I suppose that makes what doctors say even more important. If doctors are not on our side because they are thinking, “Should we mention the fact that they could have an assisted death?”, that poses a big cultural issue for the NHS, but also for us having confidence in the NHS. I actually find the NHS to be one of the organisations and institutions in this country that is least comfortable with disability; honestly, I could probably get better equality at my railway station. I say that because I think doctors have a very medical model—of course, we welcome that: they want to cure, they want to treat. But they do not always have the empathy to understand that some of us lead really good, fulfilled lives with the most complicated health conditions or impairments. Treating doctors as absolutely scientific and the fount of all knowledge: I think those days are gone. On giving them the powers to steer us towards assisted dying, I should say that they are not a group always on the side of people with disabilities. I am not really picking on doctors. To be honest, society has a lot of internalised ableism, and doctors are just part of that wider society.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source
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Q Thank you to all of you and for what you do. I will direct my question to Dr Jamilla—it is so lovely to hear so much about Bradford. I want to talk about what Dr Rachel Clarke said yesterday. She said that when patients had begged her to end their life, it was not because of the cancer but because they had not received proper palliative care. From your research and experience, would you say that ethnic minorities or those from socioeconomically deprived backgrounds do not always receive good palliative care? What are the dangers in this Bill for you? Dr Hussain: The data is quite clear: ethnic minority groups do not have good access to palliative care services. We have been talking today about increasing the access to palliative care, but we need culturally competent and safe palliative care to meet the needs of those people, particularly those who are most disadvantaged. We do not just need to increase the offer; it also has to meet the needs of those who are most structurally disadvantaged. In Bradford, I have spent three years trying to collect all the data so that I can understand the inequalities. But in our specialist palliative care team we reduce the inequalities for ethnic minorities, because we see them in A&E and the hospital, and we go to where they are at. The risk for somewhere like Bradford, where we are doing okay—we have a long way to go—is that the Bill creates a fear in those communities. I have been going out and trying to build trust—being trustworthy—and they made it really clear to me by saying, “We trust you; we don’t trust the system. So if I came into hospital, even if your team was there, I would be really scared to access palliative care.” In a system that is doing okay, we are now adding this new risk. We need to mitigate against that. The public health approach is really important, as is going into those communities. But we got a lot wrong for those communities post-covid, and the reason we got a lot wrong was that we did not have representation from those groups at the decision-making table at the most senior level. The people who were represented were consulted. We need that representation. I think we can do this, but the change we need is that at the most senior level we need representation from those communities. They need to have the power to make decisions. It is those people, who are going to be most harmed by this, who should be deciding what “safe” is. They should be the ones who decide if we have reached that safety level, otherwise we are going to see the same things that we saw in covid.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source
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Q Building on that, Chris Whitty and the British Medical Association said, from an ethnic minorities and reflection point of view, that the Mental Capacity Act 2005 and safeguarding training are fit for purpose. We know that we do not have a workforce that is reflective of the communities it serves and that we do not have representation at high levels, so in your clinical experience, for disadvantaged groups, do you think the training on capacity and coercion is fit for purpose?
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source
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Q I have one question following up with Baroness Falkner; then I will come to you, Fazilet, if I may. The Equality and Human Rights Commission’s briefing says that “to ensure that assisted dying is compatible with Article 2 and Article 3 rights…high-quality palliative care should be available to all who need it.” Given that there is no requirement of an assessment of the availability of palliative care before the Bill is passed, how certain are you, Baroness—and how certain do you think we can be—that in passing this Bill, article 2 and 3 rights are not being breached? Baroness Falkner: Forgive me; I should have been clearer about that. That was what I was referring to earlier. We have quite a lot of evidence. Marie Curie published a “Better End of Life” report in 2024 that talked of “patchy and inconsistent provision of care”. There is regional variability. The Care Quality Commission and Hospice UK have raised the issue of poorer access to palliative care for people with learning disabilities. In 2022, Marie Curie also highlighted the issue of cultural and ethnic inequalities. That is why an assessment at this point in time, before MPs have a definitive vote on the proposals, would be the right thing to do. It would also increase public confidence in the Bill. We think that public confidence in the measures being proposed would be profoundly important to people’s trusting that doctors and judges will also be mindful of their responsibilities in an adequate manner where terms are not clearly defined.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source
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I was talking about southern Australia, in particular. That is fine; we can move on. Thank you. Dr McLaren: I can speak to the Victoria question, if you prefer. To answer your question, we have a state-wide service that supplies the medication across the state. Medication for pain relief is available through standard pharmacy access, so there are no barriers to accessing medication for palliative purposes in rural Australia. It is quite hard to get voluntary assisted dying medication dispensed to Mildura, which is many hours away from the single-state pharmacy, so access is more difficult for voluntary assisted dying than for palliative medication.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source
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Q I have a quick question for Dr Griffiths and then Chelsea. Dr Griffiths, how does the Bill exacerbate issues for disabled women in particular who might be experiencing abuse or other vulnerabilities? Dr Griffiths: There is no indication of how you would place the infrastructure for support for people whose discrimination or injustice is exacerbated through an intersectional lens—for example, the cross-cutting of different experiences—and how that can be attested for within the Bill. For example, if an individual comes forward to discuss with their doctor their concerns, there is no infrastructure for how that would be acknowledged with an intersectional critique. There is also a concern that many within disabled people’s communities from particular backgrounds, such as women, are pre-exposed to further levels of injustice that are not accounted for, and their experiences of trying to access support for certain aspects of their life are compounded by inequalities. These issues are not addressed by the Bill. In my view, if this mechanism becomes available, the issues that some individuals face in terms of injustice will play into the consciousness of their decision to go forward with this. I cannot think of any clause or amendment that would address that issue in its totality.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source
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Q Thank you. The Australian and British media reported the tragic story of Cyril Tooze, an elderly and terminally ill 84-year-old man in southern Australia, who requested voluntary assisted dying. Mr Tooze stated that he was applying for voluntary assisted dying after waiting nearly a year for the state government to implement a care and housing package for him. He died while waiting for the application process to end. How much does social detriment influence requests for voluntary assisted dying? Please speak from your own experience and about published data. Dr Mewett: From a palliative care perspective, like Cam and Clare, I have been involved in assessing and having discussions with many, many patients who have requested assisted dying. These patients come from a whole range of socioeconomic backgrounds. In fact, if anything, they tend to come from a perhaps slightly higher, more well-educated background. There is no evidence in our jurisdiction of Victoria, where we have had five and a half years’ experience, that people who are underprivileged, less educated or vulnerable in some other way have readier access to or apply more for VAD. The case you alluded to, like many cases that are reported from Canada, is certainly tragic in its own way, but such cases are an absolute minority compared with patients who are genuinely determined to have a choice about the way they die and when. Those are separate issues: one is a social welfare issue, and the other is a VAD issue. A patient such as that would not be found eligible, unless he was eligible under the strict criteria that apply in the state in which he lived. Dr McLaren: As Greg touched on there, when that gentleman applied for voluntary assisted dying, that may have been one of his drivers, but it certainly would not have made him eligible. He did not access voluntary assisted dying, so the system worked. We do see higher socioeconomic status patients applying for voluntary assisted dying. That is evidenced in our Voluntary Assisted Dying Review Board reports, which show a greater proportion of people with higher levels of education. That data is freely available through the Victoria Government website.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source
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Q Before I move on to Chelsea, I want to point out that Professor Shakespeare said that most disabled people support the Bill. But, actually, only one deaf and disabled people’s organisation that opposes it is giving evidence. I just wanted that point noted for the Committee. Chelsea, thank you for your evidence. Eating disorders are classified as mental disorders under the Mental Health Act. The Bill explicitly states that a person cannot be considered terminally ill only because of a mental disorder. You have also talked about the withdrawal of insulin. Could you respond to both of these? Why do you believe that eating disorders would still meet the criteria under the Bill, and likewise for the issue of stopping insulin? Chelsea Roff: There is a false distinction being made in the Bill between a mental disorder and its somatic or physical manifestations. Mental disorders, especially eating disorders—not just anorexia—impact the body, and have life-threatening consequences. We had 20,000 acute hospitalisations for eating disorders in this country last year, and we have massive gaps in care. Those are individuals who, if they were to choose to forgo treatment or could not access treatment because they were on a wait list for a long period of time, would qualify under this Bill. I draw your attention to the evidence I submitted with Dr Agnes Ayton from the Royal College of Psychiatrists, and Dr Angela Guarda, a leading physician from John Hopkins University. I also draw you to our own case law in the Court of Protection where we have had physicians represent eating disorders as terminal conditions, as in the end stage of their illness. I am grateful that you have drawn the connection to diabetes, because it is not just about eating disorders. Substance use disorders would have the same effect. Outside of mental disorders, HIV/AIDS is a progressive condition that cannot be reversed by treatment. Are you okay with a 19-year-old young man who decides to discontinue treatment qualifying under this Bill? Those are the questions you have to ask. I am not, in principle, against the Bill, but you have to look at the letters on the page, because they will be interpreted after the Bill is passed. Your constituents are depending on you.
29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source
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Q I have a couple of questions. Dr Fellingham, Victoria is quite a rural state and I imagine there are difficulties reaching all parts of it. Am I right that a state-wide pharmacy service that delivers assisted dying drugs across the whole state has been set up, but there is no comparable service for the delivery of pain reduction? Dr Fellingham: A point of clarification: I work in Western Australia, rather than Victoria, but I can give you a view for Western Australia, which is significantly larger, so the problem you have alluded to is much more complicated. Would you like me to speak about the Western Australian context?
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source
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Q Sir Chris, I draw your attention to clause 42(3): “But if any provision of this Act has not been fully brought into force before the end of the period of 2 years beginning with the day on which this Act is passed, that provision (so far as not already in force) comes into force at the end of that period.” My question is: do you believe that it would be safe to implement this legislation if those provisions had not been fully put in place? Professor Whitty: If this Bill is passed—I want to stress that; I will say it once, but assume it applies for all the answers I subsequently give—we will clearly need both: a period to make sure that there is technical guidance and legislation, via secondary legislation, because obviously the primary legislation is the Bill; and necessary training for people to be able to do this in an appropriate and dignified way, if that is what Parliament chooses.
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source
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So would it be safe? Professor Whitty: We would want to have the time to do that, but you can do things at speed if you need to. My view is that this is something that is best not done at speed if we can avoid it.
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source
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Q This question applies to both of you. On there being a first doctor and a second doctor, the first doctor is required to determine that the patient has a terminal illness, that they have capacity, and that they are not being coerced or pressured. Again, it is for the second doctor to make sure that the patient has a terminal illness, that they have capacity and, again, that they are not being coerced or pressured. I appreciate that Sir Chris Whitty talked about doctors, and you talked about everybody, being trained in capacity and coercion issues, but those doctors may never have met in the first instance the person who is seeking assisted dying. The question that worries me is, to be able to fulfil all those actions in all cases, without fear of mis-determining, the two doctors would have to be specialists in all the relevant diseases. For example, if somebody has a brain tumour, lung cancer, or a different type of cancer, would the doctor have to be an expert in that to determine that the person is terminally ill? From the GMC’s point of view, would we find ourselves in a situation where doctors are working outside their professional competencies and expertise? From the BMA’s point of view, how do we protect doctors from finding themselves having to diagnose life expectancy for a disease they are not a specialist in, or to determine capacity when they are not a specialist in that, or to determine a lack of coercion when they potentially do not know the patient and do not have experience of that? Finally, when the next step is taken and the court has to rely on the testimony of these doctors to protect the patient, can those testimonies safely be relied on by a court and by a judge, given all those concerns? Mark Swindells: There are quite a few points there—let me work through them backwards. We have some existing guidance for doctors when they act as a witness—for example, in a court setting or a medical legal situation—that talks in general terms about the importance of being an appropriate witness. Inherent to that is some expertise and understanding of the topic they are assisting the court on. I suppose that those sorts of principles would be ones that, if the Bill is passed in this form—I say again, the GMC does not have a view on what the delivery mechanism or the Bill should look like—are applicable points from the guidance, which would read across. You heard from the chief medical officer his caution with regards to going with a condition-based assessment for this sort of thing. We would not have a particular view on that, but there is one thing that I want to highlight. The Bill talks about specialism in the context and seeking advice from a psychiatrist. On the specialist register held by the GMC, there are five specialisms connected with psychiatry, so some clarity—whether the Bill is intended to cover any, or a particular one, of those—would be good. I know that it is not restricted in the “independent doctor” and “coordinating doctor” roles in the Bill either, but we are aware that when doctors pursue a specialty, in the sense that they become accredited and go on to our specialist register, that does not fix in time their individual scope of practice or expertise. Many doctors will go into slightly different fields, or focus on one particular area, so one cannot necessarily rely on the specialist register as a current indication of a doctor’s area of competence in that way. On what the precise delivery mechanism is and the point you make about whether either of those two roles of doctor have seen the person, because we have not taken a view on what the law should be, we have not taken a firm view of any process or eligibility, but I note the point. Dr Green: If I may, I will clarify my previous answer, having had a little more thought. I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process. My internal thoughts on whether it should be on the face of the Bill, contained in guidance or contained in good medical practice was the point that I was unsure about.
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source
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Q I am a former NHS commissioner, Sir Chris. In Bradford West, we have stark health inequalities. Dr Jamilla Hussain, as part of John Wright’s team, will be providing evidence this week. She has found huge mistrust among marginalised ethnic groups—even more so since covid. We know that covid brought to light the inequalities in healthcare access that already existed, especially for economically disadvantaged communities. What lessons do we need to learn from covid and its disproportionate impact on ethnic minority communities when it comes to this Bill in particular and its implementation? Professor Whitty: That is an absolutely critical question, because it is very important that if the Bill is passed, all parts of society, of whatever ethnicity and of whatever background, have equal access to the Bill—or not, as Parliament determines. That will require adjustment in a variety of ways. Some can be done at a macro level—for example, making sure that everything is translated into the major languages spoken in the United Kingdom—but a lot of it will be to do with the individual interactions that doctors, nurses and other healthcare providers have with individual patients, which must take into account their own starting point, their own knowledge and, most importantly, their own beliefs.
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source
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Q Does that cover all conditions? Dr Spielvogel: We were just talking about kidney disease.
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source
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Q Dr Ahmedzai, in the evidence you submitted, you said: “I have studied the reports from, and spoken with medical and nursing clinicians from US and Australian jurisdictions and am satisfied that external coercion has never been reported or led to a prosecution.” The state of Oregon carried out a survey of people who died under its assisted dying scheme in 2023. Its report stated that 43% of those who chose to die said they did so because they felt they were, and I quote directly from the term used in the survey, a “Burden on family, friends/caregivers”. Is that something you are prepared to see happen in the UK? Dr Ahmedzai: It goes absolutely to the core of being British—we are always saying sorry, aren’t we? We apologise for everything. In everything we do, or everything we might do, we think we might be treading on toes and are always worried about being an imposition. All my professional life, I have come across patients and families in which there clearly is that feeling going on, usually with an older person or even a younger person who is drawing a lot on the emotional and physical resources of the family. It is natural that we feel a burden; it is impossible to take that out of human nature. The issue is, does feeling that one is, or might become, a burden something that could influence a decision as major as looking for assisted dying? In that respect, I look to all those jurisdictions that have been offering assisted dying in different ways, and I have never seen a single case ever taken to the police or prosecuted. Evidence I have heard from other jurisdictions shows that, yes, it is possible—we all go through life feeling that we are a burden on someone—but it does not influence people in this particular decision. If anything, I am told that, in other jurisdictions, families are saying, “No, don’t do it.” They are exerting negative coercion—“don’t do it” coercion—but people are saying, “No. It’s my life. I’ve made my mind up.” They have mental capacity, and we respect that.
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source
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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.
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source
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Q In California—we are talking specifically about renal failure—they have got a six-month limit, in some cases, because of insurance policies. Is that being broadened out? I understand there is a huge difference in American politics in the laws regarding lobby groups, and so on, and the influence of those insurance companies. We have an NHS to which those restrictions do not apply. Have you done any analysis on that? How would you respond to that? Dr Spielvogel: Can you clarify what you mean about kidney disease and the six-month prognosis, and the interplay with insurance there?
28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source
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I welcome my hon. Friend’s intervention and I recognise Laura Hoyano’s expertise. I would respectfully push back that, as a victim of domestic violence—as a person who has experienced it and campaigned on it for all my adult life—there is a difference between an academic who has studied it and people who have worked with victims, in particular elderly women. The expert is a barrister with experience of young people and children and domestic abuse, and Professor Monckton-Smith is also an academic—yes, she has been a police officer—but I would value a witness who has worked with victims of domestic abuse. That is all I have to say on it. Question put, That the amendment be made. Question negatived. Main Question put and agreed to. Resolved, That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025, after “Professor Aneez Esmail (University of Manchester)” insert “Disability Rights UK”.— (Kim Leadbeater.) Resolved, That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025, after “Dr Lewis Graham (University of Cambridge),” leave out “John Kirkpatrick” and insert “Baroness Falkner”.— (Kim Leadbeater.) Resolved, That in paragraph (2) of the sittings resolution agreed by the Committee on 21 January 2025, after “Wednesdays” insert “starting on 11 February 2025”.— (Kim Leadbeater.) Ordered, That further consideration be now adjourned. — (Kit Malthouse.) 5.30 pm Adjourned till Wednesday 29 January at twenty-five minutes past Nine o’clock. Written evidence reported to the House TIAB 01 Ben Scott TIAB 02 Michael Vidal TIAB 03 Compassion in Care TIAB 03(a) Compassion in Care (further evidence) TIAB 04 Dr George Gillett, an NHS doctor and psychiatrist TIAB 05 Dr Stephen Hutchison MD TIAB 06 Dr Andrew Boorne TIAB 07 Jess Carrington, Registered Social Worker and Best Interests Assessor TIAB 08 Greg Lawton MPharm MRPharmS FFRPS MBCS LLM, Barrister and Pharmacist TIAB 09 Australian Care Alliance TIAB 10 Dr Peter Knight TIAB 11 Dr Isky Gordon FRCR, FRCP, Emeritus Professor Paediatric Imaging, UCL, London TIAB 12 Dr Peter O’Halloran, RN, PhD, Registered Nurse, Senior Lecturer, Queen’s University Belfast, Researcher in chronic illness, palliative and end-of-life care TIAB 13 Rose TIAB 14 Dr Rachel Fisher TIAB 15 Nigel Andrew Gordon Jones, a retired Consultant General Surgeon TIAB 16 St Gemma’s Hospice TIAB 17 Sir Nicholas Mostyn TIAB 18 Leah Locke TIAB 19 Alison Taylor TIAB 20 Dr Katharine Crossland TIAB 21 John Forrester TIAB 22 Don Stickland TIAB 23 Christina Blandford-Beards TIAB 24 Society for the Protection of Unborn Children (SPUC) TIAB 25 Catholic Bishops’ Conference of England and Wales TIAB 26 British Association of Social Workers TIAB 27 Plunkett Centre for Ethics: A centre of Australian Catholic University located at St Vincent’s Hospital Sydney TIAB 28 Dame Sarah Mullally, Bishop of London, Lead Bishop on Health and Social Care for the Church of England and former Chief Nursing Officer for England on behalf of the Bishops of the Church of England and the Archbishops’ Council TIAB 29 Cicely Saunders International TIAB 30 Lejeune Clinic for Children with Down Syndrome TIAB 31 Voice for Justice UK TIAB 32 Get on Downs - a Down Syndrome Support Group TIAB 33 British Medical Association (BMA) TIAB 34 Portsmouth Down Syndrome Association TIAB 35 Better Way campaign TIAB 36 Hospice UK TIAB 37 Association of Catholic Nurses for England and Wales TIAB 38 East Midlands Palliative Medicine Consultants and Specialty Doctors TIAB 39 Marie Curie Palliative Care Research Department, University College London (UCL) TIAB 40 Humanists UK TIAB 41 Nuffield Council on Bioethics’ (NCOB) TIAB 42 Marie Curie TIAB 43 LOROS, the Leicestershire and Rutland Hospice TIAB 44 Professor Emeritus Sam H Ahmedzai TIAB 45 Professor Nancy Preston, Professor of the International Observatory on End of Life Care, Lancaster University; and Professor Suzanne Ost, Law School, Lancaster University TIAB 46 Professor Alex Ruck Keene KC (Hon) TIAB 47 Anureg Deb and Dr Lewis Graham TIAB 48 Australian Centre for Health Law Research, Queensland University of Technology, Australia TIAB 49 The Bios Centre TIAB 50 The Orders of St John Care Trust TIAB 51 Living and Dying Well TIAB 52 Professor Katherine Sleeman, King’s College London TIAB 53 British Islamic Medical Association (BIMA) TIAB 54 Joint written evidence submitted by Chelsea Roff (Eat Breathe Thrive, UK), Dr Angela Guarda (Johns Hopkins University School of Medicine, US), Dr Philip Mehler (University of Colorado School of Medicine, US), Dr Patricia Westmoreland (University of Colorado, US), Dr Scott Crow (University of Minnesota, US), Dr Catherine Cook-Cottone (University at Buffalo, SUNY, US), Dr Anita Federici (York University, Canada), and Dr Agnes Ayton (Oxford Health NHS Foundation Trust, UK) TIAB 55 Professor Allan House TIAB 56 National Care Forum (NCF) TIAB 57 AtaLoss TIAB 58 Compton Care TIAB 59 Dr Odette Spruijt, Medical Director, Launceston Specialist Palliative Care Service TIAB 60 Rachel Pegrum, Independent Social Worker TIAB 61 Abdul Rahman Badran TIAB 62 Alan Thomas, Professor of Old Age Psychiatry, Director of Brains for Dementia Research, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University TIAB 63 Dr Julian Neal TIAB 64 Dr Raymond Towey TIAB 65 Multiple System Atrophy Trust TIAB 66 Dr Adrian Tookman TIAB 67 Royal College of Psychiatrists TIAB 68 UK Medical Freedom Alliance TIAB 69 Association of Anaesthetists TIAB 70 Catholic Union of Great Britain TIAB 71 My Death, My Decision TIAB 72 Health Advisory and Recovery Team (HART) TIAB 73 Kyam Maher MLC, the Attorney-General of South Australia, in his capacity as a member of the Legislative Council of South Australia TIAB 74 Dr Calum MacKellar, Director of Research, Scottish Council on Human Bioethics TIAB 75 Christian Medical Fellowship TIAB 76 Christian Medical and Dental Association of Canada TIAB 77 Christian Legal Centre TIAB 78 Written evidence submitted on behalf of a group of anorexia nervosa sufferers and carers TIAB 79 Dr Angelika Reichstein, Associate Professor in Law, University of East Anglia TIAB 80 Dr David Randall TIAB 81 Cruse Bereavement Support TIAB 82 Compassion in Dying TIAB 83 General Medical Council (GMC) TIAB 84 Pathfinders Neuromuscular Alliance TIAB 85 Royal Pharmaceutical Society TIAB 86 Motor Neurone Disease Association TIAB 87 Dr Simon Eyre TIAB 88 Macdonald Amaran TIAB 89 Patrick Pullicino TIAB 90 Luis Espericueta, Researcher and lecturer in bioethics at the University of Granada, Spain TIAB 91 Healthcare Professionals for Assisted Dying TIAB 92 PSP Association (PSPA) TIAB 93 Association for Palliative Medicine of Great Britain and Ireland (APM) TIAB 94 Academy of Medical Royal College's TIAB 95 Care Not Killing TIAB 96 Dr Alexandra Mullock, Senior Lecturer in Law TIAB 97 Rt Hon. Sir Stephen Sedley TIAB 98 Carole O’Reilly TIAB 99 Dr Hannah Denno TIAB 100 Prof B Anthony Bell MD, Neurosurgeon, University of London TIAB 101 Matthew Hoyle, Barrister TIAB 102 Royal College of Nursing

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