Naz Shah MP: speeches

Speeches

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

  More

  Professor Sleeman’s evidence to me around palliative care says: “‘Essential’ services are not provided: A good example is that our study of community services that are provided to people with advanced illness found that just 1 in 3 areas consistently provides a 24/7 palliative care telephone advice line—even though this has been a NICE recommendation since 2011…Another example is that the most recent NACEL audit (National audit) found just 60% of hospitals provide a 7 day face to face palliative care service— even though this is also a NICE recommendation, and was a recommendation in the One Chance to Get it Right report (that came out of the Neuberger review—around 2015.)” I appreciate the hon. Gentleman’s important point, but does he agree that not every GP is able to keep abreast of all the palliative care advances being made, which palliative care consultants would know about?

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

  More

  I completely agree, which is why the amendment tabled by my hon. Friend the Member for York Central (Rachael Maskell) is very important. I urge the Committee to accept it, as it would ensure the provision of a palliative care consultation. As my hon. Friend the Member for Spen Valley has always said, it is about having a holistic approach—we need to get back to that. In the evidence sessions, we heard that palliative care social workers can play a pivotal role in supporting patients. Those from other professions—psychological services, chaplaincy services, physiotherapists, occupational therapists and speech therapists—along with specialist nurses and medics can all contribute to the care of a patient at the end of life. In discussions with palliative care specialists who listened to the debate on 29 November, they were perplexed by the symptoms that were graphically described in the case studies, and cited poor care as the reason for them. Many such symptoms can be controlled, and they were shocked that such examples of poor care were presented as a reason for assisted death, rather than for making good quality palliative care available to all patients. We further heard evidence, especially from Dr Jamilla Hussain, that access to palliative care is inequitable. We know that those from minoritised communities and from low socioeconomic backgrounds have poorer access to good palliative care, and that people can have poor access depending on where they live, and on the day of the week or the hour of the day. Through this amendment, we want to ensure that everyone who is seeking an assisted death, or who has it suggested to them, as this Bill allows, is able to access a consultation or consultations with a palliative care specialist, who can dispel the myths while supporting them with their end-of-life plan.

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

  More

  I am grateful to the hon. Gentleman, who is being generous with his time. I want to bring in something that is very real for me at the moment. As a result of a hit and run, I have nerve pain for which I receive steroid treatment. I had treatment a couple of weeks ago and suffer from pain at the moment. My doctor is not a specialist in nerve pain; he has to refer me to a musculoskeletal service and I have been waiting for over a year for surgery. I mention that because we already have care pathways for specialisms such as nerve pain. My hon. Friend the Member for Spen Valley referred earlier to somebody who had cancer and it was a horrible experience. I would like to have thought that in that instance they would have been offered tube feeding. However, to go back to the point, the GP does not necessarily have the skillset. My GP, and there are lots of them in that practice—it is a brilliant practice at Kensington Street—has to refer me on. That is the point of the Bill. The amendment speaks to developing an established care pathway. If we are to pass this legislation into law, we must ensure that there is a care pathway to explore palliative care. At the moment clause 4(4), which my hon. Friend the Member for Stroud referred to earlier, says this has to be explored in the wider term. However, what that looks like is not a specialty. For some people with cancer and palliative care needs and six months to live, their trajectories could be—

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

  More

  I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it. As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care. There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it, “They are doing this to save money…to kill us off.” To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.

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

  More

  I have a few concerns about what we have just heard in relation to the amendment. One of them is in relation to Dr Cox’s evidence. What Dr Cox actually said was: “The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions”. –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q91.]

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

  More

  I rise to speak to amendments 10, 181 and 283. I will start with amendment 10, which is very significant: it would make a small but crucial change to clause 2.

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

  More

  Will the hon. Member give way?

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

  More

  I absolutely agree that if the Bill is to get through Parliament, it has to have those mechanisms and safeguards in place, but I am sure we will come to those later. If we do not know with any reasonable degree of accuracy how many cases there have been worldwide, we cannot say where the majority of such cases have occurred. When we are told that there have been zero assisted deaths of people with anorexia in Australia, I would err on the side of caution—another witness said that there were zero deaths involving coercion. I understand that my hon. Friend’s amendment 181 also attempts to change clause 2, but the change would still allow people to qualify for an assisted death if they had a mental disorder alongside a physical disorder. I have no doubt that this stems from a compassionate desire not to exclude—for example, someone who has mild depression and a major physical illness—but its effect is to create a major risk for people suffering from both a mental health disorder that affects their eating and a physical disorder caused by not eating. To avoid that risk, the Bill must be much more tightly worded than it was when presented to the House on Second Reading, and it must be much more tightly worded than amendment 181 would make it. We must make it much harder in the Bill for people to qualify for assisted death by way of having malnutrition caused by an eating disorder. It is a complex problem, and I believe no one amendment will solve it completely. I have submitted two amendments with the aim of making a contribution. Amendment 11 would also make a significant contribution to solving the problem, and I urge all Members to support it. I turn to amendment 181, tabled by my hon. Friend the Member for Spen Valley. Although the Acts mentioned in clause 2 define mental illness and disability as being taken from the clear medical model, it is not clear if she is further suggesting that a new definition should be used—for instance, the social model. Someone could have a significant impairment under a social model of disability, and for the purposes of the Bill, not consider themselves to be a disabled person. Therefore, they could qualify for an assisted death, thus rendering the provision of no worth. It is therefore unclear what my hon. Friend is similarly proposing with regard to mental illness. Amendment 11 is needed to provide assurance that if someone does have a mental illness, then it is tightly defined and would preclude them from being able to access an assisted suicide, in case the reason they are seeking it is the mental illness and not the terminal diagnosis. I will speak further on that later. If amendment 181 was agreed to, the clause would read that a person is not to be considered terminally ill “only because they are a person with a disability”. There are two obvious problems with the amendment. First, the amendment removes references to the Equality Act 2010 and the Mental Health Act, which previously defined who did and did not have a disability or a mental health disorder, but having removed those definitions, it does not then define disability or mental disorder in the Bill. What definition will medical practitioners, and indeed applicants, use to determine who does or does not have a disability or mental disorder?

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

  More

  I beg to move amendment 281, in clause 1, page 1, line 20, at end insert— “(c) has met with a palliative care specialist for the purposes of being informed about the medical and care support options.” This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.

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

  More

  I wonder whether my hon. Friend the Member for Spen Valley has considered whether she would tighten the clause. Have any options been explored, and what have the Government said about her removal of the Equality Act—

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

  More

  I thank my hon. Friend for his intervention. Actually, there is nothing in the Bill that suggests that. We can only imagine and try to empathise as much as we possibly can with any person who has been given a diagnosis of six months to live. In that six-month process, they might not wait; as my hon. Friend, who is a doctor himself, has said, this is about autonomy. They might not wait until they get to a position where there is a lot of suffering; they might not wait to see those six months out. They might decide they do not want to take that risk, when actually they might have lived another 15 years, another year or another two years. That is the point of this amendment.

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

  More

  I agree very strongly with the sentiments expressed by my hon. Friends the Members for Spen Valley and for Penistone and Stocksbridge, and I hope that the Committee can later return to the state of palliative care in this country. I underline that the matter of the six-month prognosis was not some minor detail on Second Reading; rather, it was a central plank of the arguments made by those who said that we should pass the Bill because its safeguards were the toughest of any assisted dying law in the world. It is less than three months since my hon. Friends spoke those words, and yet we are already discussing an amendment that would remove the six-month prognosis.

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

  More

  I completely agree with the hon. Member. Coming back to the physicians who justified eligibility by citing the physical complications of anorexia, not just the mental disorder itself, we know that in all 60 of the cases that have been cited, the person did not have a terminal illness other than the one that was caused by anorexia, because that then fit the definition. Under the Bill, the same could happen here. I say in response to the hon. Member for Richmond Park that eating disorders or substance use disorders could still qualify if a doctor determines that the resulting physical deterioration meets the criteria for terminal illness. I will speak to anorexia in much more detail when we debate a further amendment that I have tabled. Amendment 181 would also remove references to the Equality Act and the Mental Health Act, and the Bill would not define disability or mental disorder. That raises serious concerns, so I will not support the amendment. I encourage Committee members to strengthen the Bill in this regard and not weaken it. The Acts define mental illness and disability as taking a clear medical model, and again it is not clear whether my hon. Friend the Member for Spen Valley is further suggesting that a new definition should be used—but I am going over ground that I have already been over.

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

  More

  I am happy to correct the record.

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

  More

  First, this is not an issue for a tribunal, where it would be on the balance of probabilities; it is not an issue for a court of law or a criminal court, where we would be using proof beyond reasonable doubt. What I am trying to demonstrate is that doctors, in those diagnoses where they do get it right, have much more certainty. It might be that people have six months to live because they have different types of cancer. I am certainly not a clinician or an oncologist, but I know from the evidence we have had and from speaking to people that some people’s diseases—the specialists know better—have a trajectory of plateauing out and then dropping right at the end and some have a jagged kind of decline. Some of those diseases can be predicted with much more clarity than others. On the surface of it, in September, it might be the case for somebody that that is within the time—as for one lady who was told that she would not have more than six months to live. She is the founder of the Music of Black Origin awards and I was with her last week. She was absolutely fighting; she was not supposed to make it to that day. It is for the medics to decide—it is not for me to decide—but I would like medics to have much more certainty than they currently do, so that we would not have 47% of cases being misdiagnosed. That is what I am trying to get to, but I thank my hon. Friend for his intervention. I argue that there is still a danger of using the standard prognosis that is currently in the Bill. The current research into doctors’ prognoses indicates that about half of their estimates are incorrect. My amendment would hold doctors to a higher standard of certainty. Under the measure, they would be explicitly held to a prognosis that death would occur with reasonable certainty within six months, and that that would have to be true even if the patient underwent all recommended treatment. To go back to my hon. Friend’s intervention, this amendment is about raising the bar for how our medics make decisions. I submit that it would be a stronger test than the one currently included in the Bill. My hon. Friend the Member for Spen Valley has frequently stated that she wishes to create a Bill with the toughest safeguards in the world. I keep coming back to that, because the whole purpose of speaking to all these amendments is to put in opportunities to try to strengthen the Bill. By their nature, all these amendments reflect hon. Members’ concerns. This amendment would tighten the prognostic standard required of doctors and would therefore contribute towards tightening the Bill’s safeguards. I hope that hon. Members support it. Finally, I turn to amendment 402. I will repeat a lot about anorexia, but it is an important amendment. I have tabled it for a simple but extremely important purpose: to prevent people from qualifying for assisted dying by stopping eating and drinking to the degree that they develop severe malnutrition, such that a doctor would give them a prognosis of six months to live. It specifically aims to protect people with severe eating disorders, including anorexia nervosa, and would also protect people with a severe wish, as one of the psychiatrists who testified before the Committee put it, to “hasten death”. I hope that my hon. Friend the Member for Spen Valley, and all other Committee members, will support this amendment. Let us make no mistake: the Bill, as currently drafted, has a horrible loophole that all of us should seek to close. We know that anorexia sufferers and other people with eating disorders can and do stop eating to the point where they are dying of malnutrition. We should not allow such people to qualify for assisted death. Unfortunately, that is not a hypothetical danger; it is happening. We know from the evidence that the Committee has received that that has happened in other countries. A group of eight experts on eating disorders submitted written evidence TIAB54 to the Committee some weeks ago. The experts included Chelsea Roff, who has been referred to many times in this Committee, and who gave clear testimony before the Committee, as well as seven medical doctors from hospitals in the UK, the US and Canada. I hope that all Committee members have read the evidence, but I would understand if they had not, because we have had nearly 400 pieces of evidence to go through and very little time to read it. It seems to me, however, that if we are trying to write the best possible Bill, with the strongest possible safeguards, we have to pay the written evidence of experts the attention that it deserves. In their written evidence, that group of experts said: “Patients with severe eating disorders frequently experience profound psychological distress and may express a desire to die. While this may appear to reflect a clear and informed wish, it is often a symptom of their psychiatric condition, which is remediable with appropriate treatment.” The experts found that at least 60 patients with eating disorders received assisted death in several jurisdictions worldwide, including the US, Canada, the Netherlands and Belgium. I stress the phrase “at least 60” because we cannot be entirely sure that that is the full total. It is sadly the case that some jurisdictions are much more painstaking and transparent in the data they publish on assisted death than others. In itself, it is tragic that people died in that way, but two things surely make the fact even worse. There are certainly men with eating disorders, but this is a problem that disproportionately affects women and girls. We know that the incidence of anorexia nervosa is much higher among women than among men in every age group. That is tragic. In every case we know of where a person with an eating disorder received an assisted death, that person has been a woman. I say it again: we cannot allow the Bill, as currently written, to stand. The Labour Government was elected with a mandate to reduce violence against women and girls. We surely cannot pursue that goal while at the same time increasing the vulnerability of women and girls who have eating disorders. There is nothing in the Bill as it currently stands that would stop doctors signing off on assisted death for someone who had starved themselves into malnutrition. The courts in England and Wales have already begun accepting that some people with anorexia have reached a terminal stage. In the Court of Protection case, The NHS Trust v . L & Others, which took place in 2012, a 29-year-old with severe anorexia was described in the ruling as follows: “The prospects of her recovery overall approach zero…given that it is extremely unlikely that Ms L will recover from her anorexia…in best interests to move to palliative care if L…in terminal stage of her illness.” The right hon. Member for North West Hampshire raised the Court of Protection. There are 10 cases where the Court of Protection has made rulings. Of them, only one case, in 2012, ruled that the young lady could be force-fed.

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

  More

  I thank my hon. Friend, and my hon. Friend the Member for Penistone and Stocksbridge, for making it clear that they would not vote for the amendment. I also thank the hon. Member for Harrogate and Knaresborough for bringing forward an amendment that discusses those issues. However, whether it is withdrawn or not, it is an amendment that we are debating and talking to. The hon. Member for Harrogate and Knaresborough, who tabled the amendment, no doubt feels very strongly that the conditions of patients with neurodegenerative diseases make a case for relaxing the six-month prognosis to 12. There may well be a good case for doing so, but we can only consider the case for extending the prognosis to 12 months because of the challenges created by neurodegenerative diseases if we have first considered that extremely complex subject. We cannot say that the Committee has studied the difficult subject of neurodegenerative diseases and how they would affect the administration of the Bill. We have not heard from witnesses on the subject, and we have not been able to ask them questions. We did solicit evidence on whether neurodegenerative diseases would affect the ability to self-administer lethal drugs, but we have not had time to study the written evidence. I appreciate that the hon. Member for Harrogate and Knaresborough is not going to press the amendment to a Division, which leaves some of what I wrote earlier obsolete. I appreciate the hon. Member’s efforts. We are sent here by our constituents to represent them to the best of our ability. I certainly try to do that, and I know my hon. Friend the Member for Spen Valley always tries to do that—I have no doubt that the hon. Member for Harrogate and Knaresborough and all others are trying to do that. We vow to represent our constituents, and had the amendment gone to a Division I would not have been able to support it, simply because we cannot make those difficult decisions without being properly informed. We cannot make up our minds to change the Bill because of a complex set of diseases.

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

  More

  My hon. Friend is making her points very clearly. The last words of amendment 181 are: “Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).” Does that not demonstrate that the amendment does not change the test for terminal illness?

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

  More

  First, I will speak to amendments 9 and 10, then to amendment 234, and then to my own amendments 48 and 402. I hope it is in order to note that the hon. Member for South Northamptonshire (Sarah Bool), as the hon. Member for Reigate already mentioned, is a type 1 diabetes sufferer. Amendments 9 and 10 both concern matters of which she has a personal understanding. Amendment 9 would mean that an illness, disease or medical condition, the progress of which can be managed or controlled by treatment, would not be characterised as a terminal illness. The amendment provides that instead of saying that the illness cannot be “reversed” by treatment, the Bill should say that its progress cannot be “controlled or substantially slowed”. The amendment is clearly a most important one. It seeks to prevent illnesses that can, in fact, be treated effectively from being classified as terminal illnesses. The amendment would work to mitigate two very serious risks posed by the Bill. First, it would make it more difficult for someone who, for whatever reason, wished for an assisted death to qualify for that process by failing to follow a reasonable course of treatment. I do not say that the amendment would make it impossible for anyone not to do so, but it is an important safeguard. It would also provide a safeguard against the expansion of those conditions that would qualify people for assisted death. My hon. Friend the Member for Spen Valley and members of the Committee have repeatedly praised the Oregon law, but we surely do not want to follow that example in every way, since we know that in Oregon, sufferers of anorexia have been able to access assisted dying. Again, I do not say that the amendment would make it impossible to expand the list of conditions, but it would make it harder. My hon. Friend has said repeatedly that she wants the Bill to have the strongest safeguards of any assisted dying law in the world, so I hope that she will join me in voting for amendment 9.

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

  More

  I thank the right hon. Member for his intervention, but my understanding is that the judge found that those individuals lacked capacity to make decisions about their treatment; whether they had the capacity to decide to end their life is a completely different test. I apologise in advance for repeating this, but it is not something that we have tested. They had the capacity to refuse. The judge ruled that they could not be force-fed. Tragically, in nine cases, while not force-feeding those young women would lead to their death, the judge insisted that force-feeding would not be in their best interests. That is what happened in those cases.

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

  More

  The crux for me is that at Second Reading, when the Bill was voted on, many Members cited that one of the central planks to that debate at the time was the six-month prognosis. The amendment would increase that to 12 months. As I have said, my concerns are that we are only three months on from that conversation and we are already trying to expand the Bill, which is why I would not support the amendment. I have said quite a bit on amendment 234, so I will leave it. I will now speak to amendment 48, which I tabled. Under the current wording of the Bill, a person is terminally ill if their death “can reasonably be expected within 6 months.” My amendment would change that so that for a person to be considered terminally ill their death would have to be “expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”. One of the risks that confronts the Bill is that of misdiagnosis. That is not some remote possibility. Let me go into detail. As hon. Members know from the evidence brought before the Committee, prognosis is not a precise science. Even with physical illnesses, determining life expectancy is highly unreliable. Government data from the Department for Work and Pensions reveals that one in five people given six months to live are still alive after three years. A study spanning 16 years found that doctors wrongly predict how long terminally ill patients will survive in half of cases. Out of 6,495 patients who were predicted to die within six to 12 months, more than half—3,516, to be precise—lived longer than expected. If the Government themselves cannot accurately determine terminal illness for benefits, how can we rely on such predictions to justify ending lives? Studies cited in written evidence submitted to the Committee have found that clinicians are routinely inconsistent and inaccurate in their prognostic assessments, often underestimating survival. Professor Katherine Sleeman, a palliative care specialist, underlined that point in her evidence to the Committee. Doctors face considerable difficulty in prognosing whether somebody is in the last six months of their life. Professor Sleeman cites studies based on large samples of patients for whom doctors prognosed life expectancy. The studies found that 47% of the patients whom they predicted to have six months to live in fact lived for longer than that—in some cases considerably longer. I would argue that there is a danger in using the standard of prognosis currently in the Bill. The current research into doctors’ prognoses indicates that almost half of their estimates that a patient has six months to live are incorrect. We do not want people to choose assisted dying on the basis that they have only six months to live when a very high proportion of them will in fact live longer if they are not given assistance to die by taking a lethal drug or drugs. My amendment would hold doctors to a higher standard of certainty. Under that measure, they would be explicitly held to prognosing that death would occur with “reasonable certainty” within six months, and that that would be true even if the patient underwent all recommended treatment.

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

  More

  I agree that we did hear that, but we did not hear from experts in the Bill, and at that point it was not discussed. While I acknowledge my hon. Friend’s point that we did speak to Sir Nicholas Mostyn, we did not have further evidence, and this measure was not in the Bill when we took evidence from those witnesses.

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

  More

  It is absolutely what is guiding me. I am sure we all know people who were told that they had six months to live and have lived a lot longer. We have heard stories of people who were told that they had six months to live and lived beyond 20 years more. We have heard lots of tragic cases, for example in the world of Dr Jamilla Hussain, that would really benefit from the Bill’s being available to them. But equally, there are other families whose loved ones have survived—and not just survived, but thrived for years and years. In fact, a close friend of mine, who happens to be a constituent of my hon. Friend the Member for Spen Valley, was diagnosed not to live very long. It was an emotional time for her daughters. Eighteen and a half years later, she is still alive, well and thriving.

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

  More

  I concur with the hon. Member’s remarks.

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

  More

  If we take that number, then that 30% or 40% who do not take that decision is maybe a few hundred people. However, the truth from Professor Sleeman’s evidence is that we are talking about thousands of people who are misdiagnosed every single year. She was talking about 3,516 who lived longer than expected. Yes, I recognise and value my hon. Friend’s comment that 30% or 40% of people do not take up assisted dying, but—perhaps I will talk about this when I move on to the next amendment—there is also a risk. If we go back to the Bill promoter’s intention to make the wording tighter, then surely this is a safeguard that she would support, just to ensure that we are making it as tight as we possibly can.

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

  More

  I thank the right hon. Member for his intervention. I have talked about that case, and the court concluded: “The prospects of her recovery overall approach zero… Given that it is extremely unlikely that Ms L will recover from her anorexia it is…in her best interests to” move to palliative care, as it was considered a terminal illness. In some ways, that makes my point for me: she was diagnosed as terminally ill. The purpose of the amendment is to close that loophole. The majority of these cases are young girls and young women. I do not want them to get to a stage where they qualify under the Bill because they have a terminal illness due to refusing food, because that can be treated. That is the point that I am trying to make. Let us say that only one or two people with anorexia have an assisted death if the Bill becomes law without my amendment. I hope that every member of the Committee would agree that even one such death would be unacceptable. Some might say, “Oh, but we must not make the perfect the enemy of the good.” That has been said in the debate, or sentiments have been expressed that reflect that sentence. That is a good argument to make when we are trying to persuade our teenagers to finish their homework for school and so on. It does not wash for me when we are trying to create a Bill with the strongest possible safeguards for vulnerable adults, and it is too close to the arguments made in favour of brutal actions across the globe. We say things like, “To make an omelette, you’ve got to crack a few eggs.” If we want to make the Bill the best it can be, we cannot use such arguments. Perfection is not the enemy of the good—perfection is absolutely what we should be pursuing in this Committee. Reference was made to one of the witnesses who gave oral evidence. I remember being aghast at the idea that these two people who died in Oregon were somehow a red herring and that there had been only two. It was really disappointing, and I was extremely angry at that comment. That is not something we should be doing or the standard we should be setting. We cannot be saying that. There is nothing good about letting people who have sadly reached an advanced state of malnutrition be given assisted dying. Surely we can agree on that. If this Bill does not include my safeguard, it will do two things. First, it will increase the dangers of anorexia. People already develop anorexia to such a degree that they perish of malnutrition. Allowing such people to apply for assisted dying will mean that more severe anorexics die. If we do not adopt my safeguard, we run the further risk that those who are not anorexic, but wish to hasten death, stop eating in order to qualify for an assisted death. Both of those would be truly malign. I would hope all Members of the Committee will accept my amendment to protect those who would otherwise be at risk of starving themselves to an assisted death. I also want to bring to the Committee’s attention a public letter that has been released this afternoon by nearly 40 individuals who work in the field of eating disorders. They have said, on the amendment to which I am speaking: “This amendment states that mental illness alone does not qualify as a terminal illness, but as the legal text (“Nothing in this subsection…”) makes clear it has no effect beyond restating that the condition must meet the requirements of clause 2(1). If a doctor holds that a mental illness meets the test in clause 2(1) for terminal illness, this amendment will do nothing to prevent that.” They further say: “Eating disorders are treatable. They are life-threatening when left untreated or poorly treated, but this risk is preventable, and deaths from eating disorders are not inevitable. As campaigners, clinicians, charities, and organisations working with those affected, we urge the committee to take these concerns seriously and ensure this bill does not put people with eating disorders at risk of premature death under the guise of assisted dying.” On my amendment 402, they say: “Amendment 402: Explicitly states that a person cannot be deemed terminally ill because they have stopped eating or drinking.” On amendment 48, they say: “Amendment 48: Clarifies that a person is only considered terminally ill if their death is reasonably certain within six months, even with all recommended treatment.” They are supporting those amendments, 9, 10, 48, 402 and 11. On that note, I will finish.