Naz Shah MP: speeches 2025

Speeches

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

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  Q Thank you very much for sharing such personal experiences. Liz, you talked about your brother, and going over, and how peaceful it was for you. We have heard lots of witnesses talking about people who have felt like a burden. I am glad that was not the case with your brother’s death. Would you support adding more safeguards to the Bill to make sure that we protect those who are at risk from coercion and who might not have capacity? Liz Reed: I understand the big focus on coercion. It is very similar in Australia. The difference between the Queensland Bill, specifically, and the Bill proposed here is that, in the Queensland Bill, coercion is punishable both ways: you can be punished for trying to coerce someone into an assisted death but also for trying to change their mind the other way. Those safeguards are in place because you hear anecdotally from practitioners that, broadly, people are being coerced out of this. In our experience, the day before my brother died our mum said to him, “Are you sure?” She was not trying to coerce him, but was she trying to make him go on longer? Absolutely. That is her son, and that is completely natural and normal. She did not want to see him die. His response was, “This isn’t living.”

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

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  But it is not, because—

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

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  Q Thank you very much for coming today and sharing your stories. I have two questions. Julie, you said that you had family liaison and counselling. How long did that go on for? This Bill does not have that requirement, so do you think it is something that we should put in it? Julie Thienpont: Maybe I said “counselling”, but it was not a session of counselling. It was somebody asking my opinion to check that I was 100% behind Guy. His son also did that by proxy—via us—because he was in a different part of Spain. They wanted to ensure that he had talked it over with family members. It was not hastened along, because he had been given a short life span, so it did not take terribly long. He had to wait about three weeks before the initial ball started rolling, and then two weeks later a family doctor and nurses from the hospital came round for form filling, reading through, translating and signatures, and again another two weeks after that. Each time, I believe it went before a panel. We did not, but the paperwork had to go before a panel. They were left in no uncertain terms that that was the way he wanted to end his life. It was a very peaceful, serene and beautiful death, as opposed to what it would have been like. He was able to speak to his relatives in Australia, his brothers in Belgium and other family members, and I was able to hold his hand. Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, “Don’t be afraid.” He said, “I’m not afraid,” and he winked at me just before he closed his eyes. On the process, perhaps I should have said that it was intravenous, so he had a drip in each arm. It was quite a quick process—maybe 10 to 15 minutes, which I thought was quite quick—but we had had lots of time that morning, you know. It was a beautiful end—the wink especially. I am left with very good memories of such a peaceful death, which was going to happen regardless. He was at peace with it, so that helped me.

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

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  Q Professor Preston, in your written evidence to the Committee, you said that Parliament should: “Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.” What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that? Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

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

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  Q Professor Owen, to follow up on the interaction that Mr Atkinson talked about, where are the gaps in research right now? Professor Owen: There are a lot of gaps. Take that point as I intend it—I do not say it as a downer on this project; I say it because it is true. There are just a lot of gaps. We are going into uncharted territory, so you might think it would be good to have more of a map before we start. This is one area where there are evidentiary gaps. It is not clear how those sorts of interactions should be assessed, what sorts of threshold should be set or what kind of training should be available. There has been a lot of talk about training; training is all very well and good, but you need to know what the point and purpose of the training is. The training has to be valid before you can roll it out. There are lots of gaps here. That relates to the question of mental capacity assessment. It is often said, “Why are we worried about mental capacity? We have so much experience of doing it in health and social care contexts; we have the Mental Capacity Act, the Court of Protection and all this experience.” We do, and that extremely important work has been done since the parliamentary discussions you had about the Mental Capacity Act all those years ago. In some areas, it is being done reasonably well: in relation to treatment and care residents’ decisions, one can talk about a body of professionals who understand the concepts, can do the assessments and can achieve, at least when trained, good levels of agreement, so you can get the system to work. But in areas of decision making where the decision itself is unsettled or conceptually much more profound or novel—I would suggest that the decision to end one’s own life has those characteristics—you cannot expect there to be such levels of reliability. That can be shown empirically in other areas where the decision making is unsettled. The question of how well capacity assessment works is actually matter-specific. That should not surprise us, because the whole concept of mental capacity is that it is matter-specific. That is the whole functional idea of mental capacity. The matter here is of the decision making to end one’s own life.

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

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  Q Dr Price, you talked in your earlier evidence about depression. One Committee member suggested that 20% of people were on antidepressants; actually, the factual position is that 10% to 11% of the adults in this country are on antidepressant medication, according to the latest statistics. To be clear, are you saying that people who are depressed are more likely to ask for or go down the road of assisted dying? Dr Price: The evidence that we have from research—this is in populations who would fulfil the criteria in terms of terminal illness—is that the prevalence of depression is around 20%. That is across a number of populations. It is associated with a wish to hasten death. Depression might impact upon that person’s decision making; I am not saying that it absolutely would, but it might. Also, treatment might change their view. We know that there is a strong association, for example, between pain and a wish to hasten death. Unresolved physical symptoms make people want to die, and when that pain is better, people no longer feel that way. That is borne out in my clinical practice. We will get urgent referrals to see somebody who wants to die and who they are very concerned about. Then the pain is under control: we see them that day or the next day and they say, “Do you know what? The pain’s better. I don’t feel like that any more.” When we think about symptoms, we need to think carefully about what is treatable and what is remediable. That may be about psychiatric interventions, but it is often about a biological, psychological and social approach.

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

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  Q Professor Owen, yesterday Professor Allan House gave evidence and talked about capacity and coercion, and I want to pick up on some of the concerns. In all four of the jurisdictions that collect data on the issue—Oregon, Canada, Western Australia and Washington—between 35% and 59% of people cite being a burden as a reason for assisted dying. What do you think is the level of confidence of psychiatrists to assess capacity and consent reliably? What would your concerns be, if any? Professor Owen: This is an essential question. I work clinically in the over-65 age group, where there is a lot of terminal illness, some of it in the last six months. You have to understand the population. The population is typically over 65 and frail. There can be a terminal illness, very typically with comorbidity. That comorbidity is often mental health comorbidity. Depression is at rates of 20% or thereabouts. Delirium and cognitive impairment is very common and often not picked up. There is patchy safeguarding, patchy access to social care and, as I know you have been hearing, patchy access to palliative care. That is the ordinary person in the NHS. I know people who select into assisted dying are not necessarily that mean person, so to speak, but that is just a picture of what it looks like for me when I go to work. That is where one starts. Now think about burden. Well, this is a group that do feel very burdened. You might think some of that is excessive; some of it maybe is natural, given the life stage. So it is a mixed picture. When it comes to pressure and coercion, I know you have been grappling with this a lot as a Committee, and I know there have been some amendments that address this. We have talked about clause 26 particularly in relation to this. Of course, when it comes back to the training question, you can take evidence on the state of safeguarding and how people are really able to assess coercive control, domestic violence and so on. I would like to draw attention to something else that I am not sure has come so much to the attention of the Committee, which is not the offences or the criminal side of this; it is the common or garden capacity assessment side of it. This relates really to clause 1. It is the issue of how you deal with interpersonal pressures on somebody in a situation where there may be a mental health problem and there may not even be a diagnosis. You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability. But it is there and it is interacting with a form of pressure within a family, let us say, which is often not malign in its intentions, but it exists. It is a very overvalued relationship, for example, with a strong sense of loyalty to somebody, or an enmeshment, for example. What you have are situations where there is an impairment and also an interpersonal pressure. They interact and they amplify each other. That can have an important consequence in terms of the functional ability of mental capacity. Outside of the assisted dying context, when you look at that in the Court of Protection, which has been struggling with quite a lot of cases like this, that phenomenon of interaction that I am talking about between interpersonal pressure and impairment is recognised. It struggles with it. I have been involved in some research to try to structure the understanding of it, but it is not at the point where it is a kind of training manual that you can lift down from the shelf and roll out across the workforce. It is much more in a kind of research and development phase. So it is important to draw attention to pressure not necessarily as malign in its intention, but which nevertheless operates in these situations and can have a subtle impact on the functional test of decision-making capacity. To bring us back to what the decision-making capacity is that we are talking about, it is the decision to end one’s own life.

• 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.