Naz Shah MP: speeches

Speeches

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

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  Where does it specify that? I know we are going to debate that subject later, but right now there is nothing that gives me assurance that those people will be excluded. Unless there is an amendment that my hon. Friend the Member for Spen Valley will support, the Bill, as drafted, would still apply to somebody if they decided not to carry on with treatment, or if they decided they did not want to take their insulin or other medication and that would lead to their death. I am happy to give way to my hon. Friend so that she can explain how she is going to deal with that.

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

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  To go back to the point about multiple opportunities and capacity, my understanding from this morning’s Guardian is that an amendment has been tabled—it was mentioned earlier; I do not know whether others have had sight of it, but I certainly have not—on potentially having a panel instead of a judge. My hon. Friend the Member for Bexleyheath and Crayford has just asked a question, and my hon. Friend the Member for Spen Valley responded by saying that she would come back to it, but my concern is that we are looking at the clause now, and once we have discussed it there will be no going back to it. I am trying to understand at what stage in the process she will come back and fix it. If we are going to address it under clause 9, clause 8 or wherever, how will that impact on clause 1? How will it address the issues that we are debating right now?

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

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  Yes, I think there should be a deprivation of that final act, because there are vulnerabilities with that prisoner while they are inside a prison. What they need is not an option of assisted death at that point. That speaks to the amendment that I tabled, which is about making sure that we do not have the conversation in the first four weeks in any case, because a diagnosis of terminal illness affects people’s mental capacity and mental health. We know that: we have heard it from the psychiatrists. It is common sense; it does not take a genius to work it out. We know that people in prison have additional vulnerabilities. We are having a debate about the issue of capacity, which we have clearly not agreed on. A person-centred care package needs to be about supporting the person, removing vulnerabilities, giving autonomy, and offering choices around accessing palliative care and medication, so that they are in a much stronger position to make an informed choice.

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

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  I do not have any comparable situations; this is uncharted territory.

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

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  Absolutely—we will come back to that conversation.

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

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  I do agree. I also want to push back on the idea that it happens fairly regularly. I would welcome my hon. Friend the Member for Spen Valley giving us the evidence of where it says that, because that is not my recollection of the evidence we have gone through so far. I appreciate that we have not gone through all of it; there might be more that we have not seen.

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

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  I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.

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

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

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

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  I beg to differ on the wording that my hon. Friend just used. It actually makes my point. As it stands, if I were an insulin-dependent diabetic—and I have been so on three occasions, with my children— I could say that if I stopped taking that insulin, I would become terminally ill. In the Bill as it stands, and as it is drafted, I would meet the criteria.

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

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  I know the right hon. Member speaks with a huge amount of experience. I am very new to the subject, but I know that the evidence from the psychiatrist was very certain—not “may well be”. The language that they used, which I referred to earlier, was very clear that it is not a good standard. They said: “We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q286.] and there is an inequity in assessment using the Mental Capacity Act. There were other categorical statements made—there was no “maybe” in there. For me, a “maybe” does not cut it at this level; the test should be much higher in order to take the option of assisted death.

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

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  I appreciate where the right hon. Member is coming from—I sincerely do. It comes back to the heart of the issue around capacity. We heard from the psychiatrist—her name escapes me, but she was on the right-hand side—that, where there is an increase of vulnerability, if somebody is told they would get pain relief, they would choose an alternative path. Those were similar words, and I will find the reference. My point is that we do not have equal healthcare access in prison. We provide prisoners with healthcare, but it is in no way equitable. The health inequalities that exist outside prison are bad enough. Palliative care is not fit for purpose in our country—it is a postcode lottery. Depending on which prison someone goes to, that will determine what kind of access they have to palliative care. It is not a level playing field.

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

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  I completely agree. Professor Owen also said: “I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill…the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q286.] Like my hon. Friend the Member for Bexleyheath and Crayford, I am certainly not a doctor, although I have experience in the NHS, but I do know that we do not have psychiatric experts or experts on capacity in this Committee.

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

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  I will be speaking to the issue in relation to terminal illness, because it relates to my amendment in another grouping. The reason I am making this point now is that it also impacts on capacity. When we are assessing capacity—again, this talks to the point—the truth is that nobody in this Bill Committee or otherwise can tell me that the Mental Capacity Act has been applied to the question, “Would you like assisted dying?”

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

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  Does my hon. Friend share my frustration that when the Minister says, “This is the Government’s position,” he says so in the absence of an equality assessment or impact assessment? I appreciate that the Government have outlined that the process is different, but in the absence of those assessments, where do we find the weight to support those positions?

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

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  This amendment is an attempt to have that conversation and to strengthen the concepts that we are debating. That is the whole point of the Committee. As my hon. Friend the Member for Spen Valley said, there is no point in having witnesses if we do not listen to what they say. This is what the witnesses said. My hon. Friend the Member for Ipswich makes a valid point. He asks whether I would, by that definition, support this amendment. I support it because it has led to a debate that we have had all morning, and that we are carrying on into the afternoon. As it is, the Bill does not give me confidence, whether it is due to the use of the Mental Capacity Act or the definition of “ability”. I feel that it needs to go much further, perhaps through the Secretary of State tabling another amendment at a later point.

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

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  Q My question is to Dr Price. We heard yesterday from Professor House and this afternoon from Professor Owen, who were talking about capacity and coercion. They also talked about how different people’s life experiences impact their ability and their state of mind, and the lack of research or evidence in that area—the courts are grappling with those issues at the moment. Is there any evidence about the effect on patients’ mental health when they have a diagnosis of a terminal or serious physical illness? Dr Price: There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death. There are a number of associations other than depression with a wish to hasten death, and they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.

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

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  Thank you very much. Pat Malone: As far as my brother and sister were concerned, there was no check for coercion. There needs to be, as in the Bill, but there are many more safeguards in the Bill than there are now. The people who are contemplating suicide now have no safeguards at all.

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

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  Q Under clause 4(2), doctors would be allowed to raise the issue of assisted dying with a patient, unprompted. Dr Rachel Clarke gave evidence to this Committee that, in some circumstances, “The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.] We heard from Dr Jamilla Hussain yesterday. She talked about mistrust of the NHS, particularly post-covid, where people had DNRs attached to them—disabled people and people of ethnic minority backgrounds in particular. Dan, are you concerned about the potential impact on people with learning disabilities? Dan Scorer: Yes. One of the first things that I said earlier was about how the initiation of that first conversation is potentially an extremely risky and dangerous moment for people with a learning disability who are terminally ill. Your question is absolutely spot on, from the point of view that it could be highly suggestive and push people on a course that they may not want to go down. That is why I am suggesting that that initial conversation has to be incredibly well supported and structured. There should, in our view, be an advocate who is supporting the person and preparing them for that discussion. Under the principles of the Mental Capacity Act 2005, the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life. That discussion with a clinician should not be taking place until the person has been able to consider that information and have support from an advocate, so when the conversation does happen the person is fully informed and has had time to think about what their wishes might be. That would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, “This is what you should do.” We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.

• 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.