Naz Shah MP: speeches

Speeches

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

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  I will pick up on some of the points to which my hon. Friend the Member for Stroud referred, given his expertise. We heard from three senior psychiatrists during the evidence sessions, who were very clear; I have already mentioned much of their evidence. The Royal College of Psychiatrists’ written evidence states: “It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of for AD/AS prior to the passing of legislation and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.” It goes on to say that the capacity to end one’s life is “entirely different” from assessing for the capacity of deciding treatment. The Bill moves us into new territory. We need a definition that meets the criteria of what we are assessing, which is to end one’s life. That has never been applied in this country. The Mental Capacity Act, as it stands, requires assessors to presume that someone has capacity until incapacity can be proven, as my hon. Friend the Member for Bexleyheath and Crayford referred to in moving amendment 322. Dr Annabel Price, Professor Allan House and Professor Gareth Owen all expressed doubts about the use of the Mental Capacity Act to assess whether a person is in a fit state of mind to undertake assisted dying. Because there is nothing in the current medical assessment that requires careful explanation of these factors, there is a real worry that there will be no opportunity to change them. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. Professor Owen said: “I have looked at mental capacity a lot in research, and there is no experience”. The reference to the Mental Capacity Act in clause 3 puts us into an area where there is no experience of the central capacity issue under consideration. He said: “It is very important that Parliament be clear-eyed about that.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.] He further said that we are in “uncharted territory”, because the ideas in the Bill are very novel. That is the hub of the Bill: it requires assessors to assume capacity as a starting point. To make the Bill the safest in the world, that is not the yardstick that we should be applying, according to very senior psychiatrists across the country. Alex Ruck Keene KC also provided evidence to the Committee. He set out some of the myths in a video. There are a few things in this for me. One is the article in The Telegraph , which senior psychiatrists alluded to, that suggested there was a shortage of specialist psychiatrists. We have already had a conversation about the shortage of judges, but we are now having a conversation about the shortage of psychiatrists. Should the measure remain in the Bill as it stands? I would like to understand from the Minister whether that is something that has been assessed, given that we do not have an impact assessment. Alex Ruck Keene referred to the National Institute for Health and Care Research, which funded a number of research projects in 2022 under the umbrella topic of implementing the Mental Capacity Act in practice—the rationale being that “The Mental Capacity Act…is designed to empower and protect people who may lack the mental capacity to make their own decisions about their support and treatment, ranging from everyday issues to more serious, life-changing decisions.” Evidence has highlighted several aspects of the way that the assessments are being carried out that are not compliant with the Mental Capacity Act. If we already have issues with how the Act is being implemented in the everyday work of the NHS and psychiatrists, how many mistakes will be made if the Bill goes through as it is? How much potential is there for mistakes to be made when assessing the capacity of those who are most vulnerable? The Care Quality Commission in its most recent “State of Care” report in October last year said: “The Mental Capacity Act 2005 (MCA) directly affects the lives of millions of people. Everyone providing care to people over the age of 16 must be familiar with this vital piece of legislation, which introduced rights and protections for people who may lack mental capacity. A decade after the House of Lords report, we continue to find a lack of understanding of the MCA among providers.” That is the most recent research, and it is telling us that we have not got this right. The Mental Capacity Act was passed over 20 years ago in 2005, but is still not understood properly or being applied for the reasons it was supposed to be. If we have not got that right in 20 years, how can we as a Committee be assured that the legislation will be applied properly when it is applied to something that it has never been applied to before and that has not been tested? How can we say that we should be rejecting an amendment that would change that and raise the bar for people? Ultimately, this affects people who are vulnerable; I will come on to that in more detail in the next group of amendments. That is a real concern, which is why I urge Committee members to support amendment 322 to get the safeguards right. We spent hours talking about capacity, but the amendments to clause 1 were not accepted. This amendment comes from experience, and I really appreciate the personal experience of my hon. Friend the Member for Bexleyheath and Crayford on this issue, because he speaks about the reality. We are not the experts, and we should be relying on the experts who give us their witness testimony.

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

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  My hon. Friend is saying that that will take two years. The MCA, which has been implemented over 20 years, is misunderstood. Does he not see the risk of two years? This is new territory, without change—

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

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  I thank the hon. Gentleman for giving way; he has been generous with his time. I do not know whether the hon. Gentleman has seen the evidence from Alex Ruck Keene KC on mental capacity. He sets out very clearly the myths around mental capacity, one of which is that mental capacity is well understood. He argues that it is not. How would the hon. Gentleman respond to that?

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

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  Apologies. My hon. Friend is right that those were different situations, but I remind him of the evidence that we heard from Dr Jamilla, for example. I am glad that he reminded me of this point, because although what happened in covid was done under different circumstances—I agree that what happened with DNRs was a “disgrace”, in his words—that is where the trust in NHS providers was lost. That leads me on to my next point: where there is no trust, there is vulnerability, and that vulnerability, in turn, affects capacity. That brings me to what Alex Ruck Keene said about vulnerability. If people feel—as they did during covid-19—that they have been DNR-ed and that, as some have said, “They’re going to kill us off!”, then the vulnerability directly impacts on their capacity. I accept that, as my hon. Friend says, these are different situations, but the argument is strong and speaks to supporting this amendment. There is a myth that mental capacity is well understood, but we have gone through that—there are a lot of myths about mental capacity. The reason that mental capacity is always difficult to assess, according to Alex Ruck Keene, is because 85% of capacity determinations by those who actually understand the law are relatively straightforward—that concurs with the point of my hon. Friend the Member for Stroud—with difficulty arising usually because of not having enough time or not listening to the person. Some research was conducted into the experience of liaison psychiatrists through an interview study across three jurisdictions, which concluded that there are four key sources of difficulty in capacity assessment, spanning both clinical and ethical domains. Those four sources included, first, a difficulty determining whether the decision is the patient’s own or driven by illness. That is important because we are talking about people who are terminally ill, so their decision-making processes may be impacted because of that, or because there is a vulnerability—either could be possible. The 15% of mental capacity determinations that are difficult include for such people. There may also be, secondly, a difficulty in applying ethical principles or, thirdly, a difficulty in avoiding personal bias. Again, that speaks to the point of my hon. Friend the Member for Bexleyheath and Crayford—if doctors are already signed up to this Bill and believe in it, will they have a personal bias? A lot of doctors and psychiatrists—according to the last article I read—are saying that they do not agree with it.

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

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  My hon. Friend makes a very valid point. Another issue that we have not got to yet, but that we will be looking at, is the doctors who do not want to take part in this process. We must consider whether there will be a bias; he is right to point that out. Will there be a subconscious bias towards helping people? My hon. Friend the Member for Stroud suggested earlier that doctors assist a person to reach a decision, according to the Mental Capacity Act. This is the crux of it for me: when a doctor is assisting a person in their best interests to come to a decision about treatment, for example, that is a different test from what we are testing here.

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

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  Will the hon. Gentleman give way?

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

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  Will my hon. Friend give way?

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

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  Not full stop.

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

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  I absolutely agree with my hon. Friend about that in most cases, but in nine of the 10 cases that went to court, young girls were found to have capacity, but their treatment was stopped, leading to their inevitable death. That is not excluded here.

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

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  Does the hon. Member agree that the amendment ultimately aims to provide clarity, and that clarity ultimately leads to safety?

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

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  How does my hon. Friend respond to not one, not two, but multiple witnesses, including the Royal College of Psychiatrists, saying, absolutely contrary to what he is saying, that the Mental Capacity Act is not the right bar and that the bar is too low?

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

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  My hon. Friend is making a very important speech. Members have alluded to the provision in the Bill that the patient would be present and would potentially have an option to be reassessed. We have heard evidence from various experts on capacity, particularly on the issues of coercion and vulnerability, and doctors have told us that it takes years to build rapport with people. At the second stage, the doctor has to be somebody independent who nobody has met, so how would they be able to tease out whether that person has capacity and whether those other influences are affecting them? Does my hon. Friend share that concern?

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

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  The hon. Gentleman said it would be rich for people to say that capacity cannot be assessed. That is not the case. I am not convinced about that, and I am not sure, from the evidence I have seen, that anybody is saying that anybody is not capable of assessing capacity per se. Would the hon. Gentleman agree that the argument is about assessing capacity for this Bill in particular? That has not been tested. The Royal College of Psychiatrists is very clear, as are many other experts, including legal experts, that the Bill has not been tested for that purpose. Therefore, the Mental Capacity Act does not meet the purpose for the Bill.

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

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  My hon. Friend is absolutely right. Without the impact assessment, how do we know what we are dealing with? That would be a normal way of progressing a Bill and dealing with amendments such as these. It feels as though we have just talked about something when the Government have already had a position on it, or have supported a particular position on an amendment. To conclude, I will press the amendment to a vote, simply because it is important that we explore every option. We are already specifying what doctors have to do. I maintain again that there are 100,000 people in this country who do not access palliative care as it is. Palliative care is crucial when we are talking about end of life and people who have had a diagnosis of less than six months to live. We will talk about illness and diagnosis in the next round of amendments, but on this amendment, I do not think that ensuring that somebody has at least explored that option is, as the hon. Member for Solihull West and Shirley repeated at least three or four times, “bogged down”. For me, it is not bogging down when we are talking about providing assisted death. The Bill is the biggest legislation on a conscience vote since 1967 in this House, and I do not care how long it takes. I feel very strongly that if we are to deliver a Bill that my hon. Friend the Member for Spen Valley said has the tightest safeguards in the world, then this debate has to happen. These conversations must happen and be explored not just for us here as parliamentarians, but in order for us to go away and say that we have done the best we can. Question put , That the amendment be made.

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

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  I appreciate that cancer does come under disability, and that people with cancer can identify as a disabled person, but my initial thought is that that weakens the Bill.

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

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  I absolutely agree. Nobody in this Committee, from what I have heard over the weeks of evidence that we have taken, is suggesting in any way that we are dismissive of people who actually need an assisted death and would benefit from the Bill. As I have said previously, and as Dr Jamilla said very clearly, there are some patients who clinically would benefit from an intervention such as an assisted death. I came on to this Bill Committee to ensure we have the best legislation and safeguards in place. The Bill currently does not ensure that people are aware of the options. This amendment would ensure that people have considered all options and can make an informed choice. If there is no requirement to speak to a specialist, I am afraid the Bill would do a disservice to those who might want to use it to seek an assisted death by not presenting them with those options. In evidence from the representative of the Royal College of Psychiatrists, we heard an example of somebody who was in lots of pain and decided to seek an assisted death, but changed their mind once they understood that their pain could be alleviated. That is what this amendment is about. I urge the Committee to vote for it, because it is fundamental that we enable people to make an informed choice and to understand the services and options available to them.

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

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  I thank my hon. Friend for clarifying that—that is really helpful. But where does the amendment leave us in terms of disabled people? I am just trying to understand.

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

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  I absolutely agree with my hon. Friend that there need to be specialists—we will come to that debate later. Let me bring our debate back to the amendment we are discussing. I understand that the Bill is drafted so that people who suffer mental disorders, such as anorexia nervosa, cannot qualify for assisted death—when my hon. Friend the Member for Spen Valley sets that out, I have absolutely no reason to doubt it—but that is not enough to safeguard people with such disorders. As we know, people with anorexia can and have stopped eating until they suffer advanced malnutrition, which is a physical disorder. In some cases, that malnutrition becomes so advanced that doctors will prognose death within six months. If we wish to protect people with anorexia and other eating disorders, we must rewrite the Bill. We must ensure that people who have those disorders, and who also have a physical disorder, cannot qualify for assisted dying. I must underline that this is not a hypothetical point or some clever objection that has been dreamed up without reference to the real world. It has actually happened—not once, but dozens of times in countries that have assisted dying.

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

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  Sorry, I mean amendment 11. Thank you, Mr Efford. I think it will be helpful to spell out what the Bill currently says, and what it would say if amendment 11 were adopted. I will also set why the amendment would provide a much stronger safeguard than amendment 181, which was tabled by my hon. Friend the Member for Spen Valley. Clause 2(3) states: “For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only” —I stress the word “only”— “of the person having one or both of— (a) a mental disorder, within the meaning of the Mental Health 1983; (b) a disability, within the meaning of section 6 of the Equality Act 2010.” If amendment 11 is agreed to, clause 2(3) will read: “A person is not to be considered to be terminally ill by reason of the person having one or both of— (a) a mental disorder, within the meaning of the Mental Health 1983; (b) a disability, within the meaning of section 6 of the Equality Act 2010.” That may seem a very small change, but it is an extremely important one. The Bill, as presented to Parliament on Second Reading, would allow someone to qualify for assisted dying if they had a mental health condition such as anorexia nervosa and a physical condition such as malnutrition. To put it with absolute bluntness, that means that somebody with anorexia nervosa could stop eating until they suffered so badly from malnutrition that two doctors prognose that the patient is likely to die within six months. That person, under the Bill, would then qualify for assisted dying.

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

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  Sorry, Mr Efford. How can a GP guarantee that all those options have been covered, even in that initial discussion?

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

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  My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway. Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.

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

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  One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?

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

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  I thank the hon. Gentleman for his intervention.

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

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  Amendment 281 would ensure that the patient receives advice on palliative care options from a specialist in the field. Medicine is fast-paced, with innovative and new medicines becoming available in quick succession. Although those in the profession try to keep abreast of developments, it is hard to maintain the depth of knowledge necessary in all specialties. A co-ordinating doctor may or may not have specialist knowledge in palliative medicine. Some courses may provide the opportunity to learn more, but others only touch on palliative medicine—covering it in less than a day of a five-year medical degree. Specialists who are leading in this field of medicine, innovating advances and working to palliate a patient’s symptoms at the end of life will have far greater knowledge of the specialism. Even in this wider debate, many who work in a different field of medicine or in general practice have simply got their facts wrong when speaking about palliative medicine—not through intent but because they have drawn on their own, perhaps out-of-date, experience or simply do not have the competencies to understand all that palliative care can provide. Pain and symptom control techniques are advancing; in our debates on this Bill, people have articulated instances of poor care rather than what clinical experts are able to achieve. It is therefore essential that a patient has a consultation with an expert in the field of palliative medicine, who can alleviate a patient’s fear, support them with a plan for the end of their life, and discuss how pain and symptoms can be managed. Hearing an alternative approach to the end of life can be life-affirming, help people discuss their fears and concerns about dying, and provide a patient with what they are seeking physically, psychologically, emotionally, socially and perhaps spiritually. Specialists in palliative medicine are trained to home in on the challenges that people naturally have on receiving a diagnosis of terminal illness and are skilled at supporting a patient to explore what end of life could look like for them. If the Committee does not pass this amendment, it would be placing itself above palliative care specialists when talking about such matters. It would undermine the need for such a specialty in medicine, like a GP who may not know the breadth of palliative medicine options for their patients. The Committee must not assume that it knows those options. Rather, it should enable those with a specialist understanding of palliative medicine to deploy their skills in this process by working through palliative care options with patients before the consideration of a path that will end with an assisted suicide. Amendment 299 is consequential on amendment 298, which would ensure that a person has a consultation or consultations with a palliative care specialist. Amendment 298 would further embed this into the practice of managing the end-of-life process to provide the patient real choice over their options at the end of life, as what can be achieved through the practice of high-quality palliative care is often significantly different from people’s perceptions—even those of clinicians. Palliative care, like so many fields of medicine, continues to advance in its application and in the steps that can be made available to palliate a person’s pain and symptoms. When pain is difficult to control using oral or intravenous pharmacology, other interventions, such as a nerve block, can result in the absence of pain. A specialist is required to provide such a procedure, but for most people who are in receipt of palliative care, this option is rarely made available. Palliative care is about not just pain and symptom control, but the holistic journey of a patient at the end of life.

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

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  The hon. Member mentioned earlier the idea that this is happening in isolation, but it is her Bill that is saying that it will just be two doctors, not a team of medical professionals.