Terminally Ill Adults (End of Life) Bill (Seventeenth sitting)

Naz Shah Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I echo the points that have been made about the importance of the initial conversations, particularly for those who do not have English as their first language. I made a commitment to my hon. Friend the Member for Ipswich that in his absence I would press amendments 414 and 415 to a Division, as he requested.

I support the general principles of the amendments relating to those who are seeking or who need interpretation to explain aspects of assisted dying to them. I support the merit of that principle and the intention behind amendments 414 and 415.

[Naz Shah (Bradford West) (Lab)]

Like the right hon. Member for Dwyfor Meirionnydd and the hon. Member for Reigate, I will not press the amendments to a vote, but I certainly want to speak to them. I do not think that they go far enough. Let us put ourselves in the position of people of colour: if the English language is seen as superior to or more powerful than Welsh, that means an extra layer of intervention that I do not think the amendments quite capture. We have not even talked about British Sign Language in our discussion of languages, but it is also really important.

I am a qualified interpreter from Urdu to English—in health, funnily enough—and I can tell the Committee that in Urdu there is not even a word for depression. The word for depression does not exist. In a previous life I chaired the largest mental health charity outside London for ethnic minority communities, and I am a former NHS commissioner, so when we talk about health inequalities and patient intervention, I understand acutely the nuances involved in translating from one language to another.

In the first instance, there is a language that someone does not understand. In the second instance, particularly for minority communities who speak languages from the south Asian subcontinent such as Punjabi, Urdu or Hindi, the words do not exist to translate the Bill literally or to talk about assisted death. That speaks to the point that the hon. Member for Reigate made about understanding what it means. I have the same stats that she cited, which show that people do not understand what assisted death is.

I would really value a response from the Minister and from my hon. Friend the Member for Spen Valley to these questions about the nuances of having such a difficult conversation. These are really brave conversations, both on the doctor’s side and on the patient’s. Take a woman from an ethnic minority background whose first language is not English and whose doctor is unable to translate their conversation with her. Would that conversation be disempowering? Would it be empowering? Would we be doing a disservice to that person, with the best will in the world from the doctor? I really would like to understand what consideration is being given to making this accessible, if it is to be a service and a piece of legislation that is open equally to all.

I have mentioned this point a few times and have raised it with the Minister, and I appreciate that the Minister has responded, but this is where my frustration—for want of a better word—comes from about not having an impact assessment in the first place. If we had had an impact assessment, the Government would have looked at these things. Even with small Bills, we go out to consultation for weeks and weeks. With this Bill, we have not spoken to anybody during Committee stage about the nuances of the provisions on languages and what they will mean for patients. Although I support the essence of what the amendments are attempting to achieve, they fall short of providing the necessary protections. I do not know how the Government will address that.

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[Sean Woodcock]

I am grateful for that intervention, which goes to the heart of my next question: why would we record and document later conversations, but not the initial one? That conversation could be one in which coercion takes place and without a record of it happening, patients and doctors are at risk. We have acknowledged that patients can be influenced by their doctors, whether consciously or unconsciously. We also noted how certain groups lack trust in the healthcare system. Dr Jamilla Hussain, in her written evidence, TIAB252, explained that the various inequalities faced by certain communities

“contribute to mistrust in health and social care services”

and that

“minority patients frequently express fear of having their lives shortened by healthcare providers, especially at the end-of-life with medication such as morphine and midazolam.”

In situations where patients are uncertain or lack trust in medical professionals, a record of the initial conversation is important to protect everyone involved. As Professor House stated, documenting the process and making records is common medical practice, so why would we differ here? We must protect patients and doctors, and making clear records at every stage of the process contributes to that.

[Naz Shah]

I rise to speak to amendments 288 and 295 tabled by my hon. Friend the Member for York Central (Rachael Maskell), both of which would improve the quality of records kept about people applying for assisted dying. Their aim is to make parliamentary and public scrutiny of the system easier and better. Amendment 288 would insert a new subsection at the end of clause 4, on page 2, line 36, reading:

“All efforts to dissuade the person from ending their own life must be recorded in the clinical records and subsequently made available to the medical examiner.”

That recognises that a doctor may follow existing guidelines and seek to dissuade the person from ending their life. It would ensure that such efforts are recorded to improve understanding of the Bill and its interaction with suicide prevention. As Professor Allan House noted in his written evidence, the National Institute for Health and Care Excellence guidelines apply

“in other areas where it is important to explore thoughts about life not being worth living”.

After an episode of self-harm or instances of suicidal thoughts, the medical professionals will explore

“current and recent personal and social circumstances, recent adversities, psychological state beyond merely assessing mental capacity and the presence of severe mental illness.”

In line with this suicide prevention strategy, a doctor may feel the need to explore those psychosocial factors and seek to dissuade the person from ending their life. We know that suicidal thoughts and depression are particularly common among terminally ill people. Dr Annabel Price, a member of the faculty of liaison psychiatry at the Royal College of Psychiatrists, gave oral evidence that among people who need palliative care at the end of their life,

“20% will have diagnosable depression, around 10% will have a wish to hasten death, and around 4% will have a more persistent wish to hasten death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 270, Q351.]

She went on to say:

“Those who had a wish to hasten death were 18 times more likely to also feel suicidal”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275-276, Q359.]

Terminally ill people are therefore at particular risk, and it is vital that the Bill does not diminish wider suicide prevention strategies. The amendment would record instances where the medical practitioner may try to dissuade the person from ending their life. Some doctors may take the view of Professor Allan House, who said in his written evidence,

“a statement about wanting to end one's life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others.”

Furthermore, this amendment would also address some of the concerns about unconscious bias. Recording efforts to dissuade the person from ending their life would show when doctors assume a person should have an assisted death where others should not. Fazilet Hadi of Disability Rights UK spoke about this in her oral evidence:

“We often find that doctors, because they cannot treat or cure us, do devalue our lives. We have had disabled people who have actually had it suggested to them or their families that their lives are expendable, when actually those people have got a lot of years to give.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 180, Q234.]

Providing records of a doctor’s efforts to dissuade the person from ending their life will address some of these concerns. It will ensure that there can be a more meaningful review of the impact of the Bill on different groups, so that the right to die does not become a duty to die.

In conclusion, amendment 288 would strengthen the safeguards in the Bill by ensuring transparency and accountability in doctor-patient discussions by requiring the documentation of efforts to dissuade individuals from ending their lives. We would lessen the impact of the Bill on wider suicide prevention strategies and provide evidence for meaningful review at a later date.

Amendment 295, also tabled by my hon. Friend the Member for York Central, is about enabling public and parliamentary scrutiny of the assisted dying system. It will ensure that, if the Bill passes, there are good records of all applications for assisted dying and that they are readily available to the medical examiner. Some Members will know exactly what the medical examiner does, but I note for the record that it is a newly created public office, in operation since 2024. The task of the medical examiner is to examine any deaths within the context of healthcare, whether NHS or private, that are not being examined by a coroner.

In light of the magnitude of the decision being made, it is important for records to reflect that. It is equally important that those who will depend on the evidence can access the same evidence on which the co-ordinating doctor made their determinations. Therefore, it is essential that the basis of the decision making is accurately recorded, along with the evidence from other practitioners. For instance, if a palliative care specialist, a clinical consultant and a psychiatrist or psychologist have been consulted, evidence of what they did and said must be readily available, and it is essential that that sits with the record of the co-ordinating doctor. The information must be gathered for the medical examiner to be able to come to their determination with all the evidence before them. It is also vital for the reporting mechanisms to be deployed for the process by which the chief medical officer compiles their report. That is ultimately what Parliament will be able to scrutinise.

Both these amendments would greatly improve the quality of records kept on assisted dying. If I recall correctly, the role of the medical examiner was brought into legislation following Shipman, to tidy up and tighten the records we keep—because clearly we had lessons to learn from them. Also, we have heard in evidence that some other jurisdictions keep good medical records, especially when that speaks to people who are potentially coerced. In one jurisdiction, we had somebody who said that they had never felt a burden, but there were many more who said that they had felt a burden.

There is no doubt that these services will continuously need improving. If we keep these records and understand that these conversations have been had then, ultimately, should this Bill become law, these records would form part of the data collection that we could rely on as parliamentarians and for those service improvements. The amendment speaks not just to the Bill itself, but to ensuring that it continues to do what it is intended to do going forward.

These amendments improve equality in assisted dying. That, in turn, will make it far easier for us in Parliament, for our constituents and for the media to find out what is happening with any assisted dying system. In this country, we believe in open justice and open Government. Assisted dying is much too important to be allowed to operate without strong scrutiny by the press, the public and ourselves in Parliament. I therefore urge hon. Members to vote for both these amendments.

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[Stephen Kinnock]

This series of amendments relates to the various discussions and assessments that registered medical practitioners, co-ordinating doctors and independent doctors will have with individuals seeking assistance to end their life in accordance with the Bill. In particular, they seek to amend the requirement for recording information about those discussions. As I have done throughout, I will limit my remarks to comments on legal and practical impacts of amendments. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have worked with the hon. Member for Spen Valley on amendments to the Bill, including new clause 19 in this group.

Amendment 345 would require the registered medical practitioner, following a preliminary discussion with a person, to record and document in that patient’s medical records the discussion and any information provided to the patient, and it would require them to provide a copy to the patient.

Amendment 288 adds an additional requirement on the registered medical practitioner who conducts an initial discussion with the person on the subject of an assisted death to record all efforts to dissuade a person from ending their own life in the person’s medical records, and subsequently to make those records available to the medical examiner. As drafted, it is not clear whether the wording “all efforts” is intended to include efforts made by the registered medical practitioner alone, or to include efforts made by others that could be reported to the registered medical practitioner. Further clarity would be needed to establish the practical implications of the amendment. The amendment does not require this information to be recorded at a specific time. I would also note that, operationally, medical examiners are not involved in scrutinising all deaths. Some deaths are investigated by coroners. Clause 29 will consider inquests and death certifications in relation to assisted death.

Amendment 297 requires a full written transcript to be produced for any consultations that occur as part of the first assessment undertaken by the co-ordinating doctor. That would potentially add some operability challenges and, if passed, we would want to explore those further. For example, there could be situations in which the person seeking assistance does not want there to be a written transcript. Further clarity is also required on whether the amendment intends to capture only consultations between the co-ordinating doctor and the patient, or whether it also intends to capture conversations with relevant persons other than the person seeking an assisted death.

I turn now to amendment 295. As the Bill stands, if, having carried out the first assessment, the co-ordinating doctor is satisfied that the person being assessed has met all requirements in clause 7(2), the co-ordinating doctor must:

“(a)make a statement to that effect in the form set out in Schedule 2, and sign and date it,

(b) provide the person who was assessed with a copy of the statement, and

(c) refer that person, as soon as practicable, to another registered medical practitioner who…is able and willing to carry out the second assessment”.

Amendment 295 seeks to add an additional requirement for the co-ordinating doctor to

“collate all evidence provided regarding the condition of the patient in a document to be provided to the Medical Examiner and the…Chief Medical Officer after the person has received assistance to die”

in accordance with the Bill. The aim of the amendment is to ensure that the documentation will be available when required by the medical examiner.

[Naz Shah]

The Minister referred to a patient not wanting to keep a written record. How does that fare if there is a potential issue of negligence later on? Is that not a requirement of every NHS service that we provide? For example, in the case of a kidney donation where an independent assessor was needed, the details would have to be kept. I am just a bit confused. I wonder if the Minister might comment on that.

[Stephen Kinnock]

The challenge we found with amendment 297 is that it is not entirely clear what would happen if the person were to say expressly that they did not want a written record. That eventuality is not baked into the Bill as it is currently drafted, so I think it would require a lot of thinking through—again, we are back to the law of unintended consequences—about the impact the amendment would have in certain circumstances if, for example, someone were to say expressly that they did not want a written record. That is the question: the impact of the amendment is not clear.

[Naz Shah]

If that is an issue, then it is my understanding, being new to Bill Committees, that it is not because the provision is poorly drafted, but because the outcome is not clear. Can the Government not clarify that on Report or Third Reading? I have heard nothing from the Government, even where they are supportive of amendments, about going away and looking at them. There is none of that conversation coming from the Government. Perhaps the Minister will comment on that.

[Stephen Kinnock]

As my hon. Friend knows, there will be an impact assessment on the Bill once it has cleared Committee. The Government’s impact assessment would be based on the Bill as it cleared Committee, so it would include the amendment we are discussing, if it were to pass. As things stand, I cannot tell her what the impact of the amendment would be in the event that it passed, because that has not been thought through from all the different angles, including if someone were to expressly say that they did not want a written transcript.

I turn to amendment 300, which would require a full written transcript of the second assessment as a record of the conversation. This goes further than the requirement that the Bill currently places on the independent doctor, which is to make a statement in the form in schedule 3. As with amendment 297, further clarity is required on whether the amendment is intended only to cover consultations with the patient, or whether conversations with other individuals should also be transcribed.

Amendment 302 would require the independent doctor to provide details of the way in which the second assessment was conducted alongside a written transcript of any consultation to the relevant chief medical officer and the person’s GP.

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[Naz Shah]

The Minister is being very generous with his time. I want to understand the idea that someone might say that they do not want a written transcript, when everybody in our country who uses the NHS has a written medical record. Why, in this instance, are the Government of the view that we should stray from normal practice?

[Stephen Kinnock]

I think it reflects the fact that, as the Committee has agreed, we are in uncharted territory on a whole range of issues here. I think it is best to think through the implications of every amendment. If it passes, every clause of the Bill will have to be assessed for its potential impact. I have other questions about amendment 297 in my notes. Does it intend to capture only the consultations between the co-ordinating doctor and the patient, or does it intend also to capture conversations with relevant persons other than the person seeking an assisted death? That is not clear from the amendment. What I am saying is that it poses more questions than it answers.

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[Naz Shah]

The Minister is being generous with his time. I am even more confused now. Originally, the Minister suggested that a patient might not want a transcript, but in response to the question from my hon. Friend the Member for Spen Valley, he mentioned that under new clause 19 people will have access to their written records. That appears to be a contradiction. I just want to nail this down. What will it be? If a patient does not want a written record, we would not have a written record to access, so that contradicts the Minister’s response. I want to understand exactly what the Minister is suggesting.

[Stephen Kinnock]

The Government have worked with my hon. Friend the Member for Spen Valley on new clause 19. The Government’s view is that if the Committee accepts it, then that new clause will provide the level of robustness and resilience that the system requires. The Government are not convinced that, on its own, the amendment that my hon. Friend the Member for Bradford West is talking about would provide the level of robustness and resilience we would be looking for. As things stand, the choice has been made to work with my hon. Friend the Member for Spen Valley on new clause 19, and we are satisfied that that would provide us with the operational integrity we need.

Amendment 302 would require the independent doctor to provide details of the way in which the second assessment was conducted, alongside a written transcript of any consultation to the relevant chief medical officer and the person’s GP. The independent doctor would be required to maintain a copy of that record to provide to the relevant medical examiner.

As I have mentioned, in executing our duty to ensure that the Bill, if passed, is legally robust and workable, the Government have worked with my hon. Friend the Member for Spen Valley on new clause 19. The new clause would require a practitioner to include a record of a preliminary discussion having taken place under clause 4. The record of the preliminary discussion must be included in the person’s medical records. Where the medical practitioner is a member of the person’s GP practice, they must make such a record in the person’s medical records as soon as practicable. Where the medical practitioner is not a member of the person’s GP practice, they must, as soon as practicable, provide a written record of the preliminary discussion to a medical practitioner at the person’s GP practice, who will then be required by the new clause to include it in the person’s medical records as soon as practicable.

The Committee may wish to note that amendment 424 would add a definition of “preliminary discussion” to the Bill that would make it clear what discussion medical practitioners would be required by law to record.

That concludes my remarks on this group. I thank the Committee for its attention.

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[Lewis Atkinson (Sunderland Central) (Lab)]

I will be brief. I am pleased to hear my hon. Friend the Member for Spen Valley confirm that she is minded to support amendment 341. It is incumbent on all of us, but perhaps particularly those in favour of the Bill, to place on record our appreciation and recognition of the fact that many people who work in our health services have strongly held religious beliefs, or beliefs of conscience—however they are motivated. As is the case for a range of other procedures and medical interventions, the law has to allow them scope to continue to practise. They make a valuable contribution to our health service and national life, and we should not do anything to impinge on that.

There is already strong guidance from the General Medical Council about personal belief, and that applies, as the hon. Member for Reigate mentioned, to the Abortion Act, as well as to the Human Fertilisation and Embryology Act 1990, the Female Genital Mutilation Act 2003 and other procedures. It is not for any of us to second-guess someone’s conscience.

[Naz Shah]

I would like to add that there is nothing about female genital mutilation in anybody’s religion. It is not a religious belief; it is cultural, and it is actually child abuse. That is what it is—there are no ifs or buts about it.

[Lewis Atkinson]

I do not disagree with my hon. Friend. I gently say that the GMC guidance specifically references that Act, so that is what I was referring to.

I am pleased to see amendment 341, which I believe would bring the legislation into line with that GMC guidance, ensuring that removing the duty to refer would absolutely not be a licence for people to be left without access to care. The GMC is very clear, as the hon. Member for Reigate said, that people must be given sufficient information and be empowered to seek the options and information that they need. Therefore, I am pleased to support the amendment.

[Daniel Francis]

It is a pleasure to serve under your chairmanship, Mr Dowd. I note that my hon. Friend the Member for Spen Valley has said that she is minded to accept amendment 341. I will, however, still briefly speak to amendment 338 and new clause 13, which stand in my name.

The British Medical Association has said that it strongly urges MPs to support the amendments, which would remove the referral requirement in relation to preliminary discussions and establish an official body to provide factual information to patients about the range of options available to them. As the hon. Member for East Wiltshire mentioned, Dr Green, in his oral evidence, said:

“The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q37.]

He went on to say:

“I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q40.]

He also said:

“The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]

The BMA’s position is that the proposal is analogous to doctors’ professional legal obligations regarding abortion, and consistent with the Bill’s inclusion in clause 23 of a right to refuse, for any reason, to carry out activities directly related to assisted dying. It has said:

“In tandem, we believe creating an official body to provide individual information and advice to patients, to which doctors could direct (rather than refer) patients, would ensure that the doctor’s views are respected, whilst also—crucially—ensuring that patients can easily access the information and support they need. Currently, whilst the Bill acknowledges the need for accurate, impartial information and advice for patients, it gives no indication of how this might be delivered—generic published information would not be sufficient. Patients would need individual advice, guidance, and support so that they can make informed decisions, and an independent information service could meet this need.”

As the hon. Member for Reigate mentioned, a member of the Royal College of General Practitioners also said:

“The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 279, Q365.]

He went on to say:

“Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q354.]

Therefore, I commend amendment 338 and new clause 13 to the Committee.

[Naz Shah]

It is a pleasure to follow my hon. Friend the Member for Bexleyheath and Crayford. I rise to speak to amendment 287, tabled by my hon. Friend the Member for York Central. Clause 4(5) currently says:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner whom the first practitioner believes is willing and able to conduct that discussion.”

If this amendment was to be adopted, it would read:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner who is qualified to undertake such a preliminary discussion, and set out palliative medicine options to provide the patient with appropriate end of life care, including referring them to a palliative medicine expert.”

Put simply, the amendment would mean that if a doctor met with a patient with a severe illness who might die within six months, but the doctor was themselves unwilling to have an initial discussion on assisted dying, they would still have to refer the patient on to a doctor who was willing to have that discussion. The patient’s decision to explore assisted dying would not be obstructed; the main change would be that that doctor would now have to discuss palliative care options with the patient. That is surely a measure that would increase the patient’s welfare.

Let us think about the kind of patient who can apply for assisted dying. They must have a diagnosis of a serious illness and a prognosis that they are likely to die within six months. The Bill’s supporters have said many times that they are worried about any changes that will reduce the autonomy of people seeking assisted death. This amendment quite obviously does not in any way reduce people’s autonomy, nor does it in any way place an unreasonable burden upon doctors. If a patient has a diagnosis of a serious illness, and if they have themselves asked for a conversation on assisted dying, then it surely must be good practice for that doctor to discuss palliative care options.

It is also only good practice that one of those options would be for the doctor, if the patient wishes, to refer the patient to a palliative medicine specialist who is more able to talk about such options. That means that the amendment would not place any undue burden on either the doctor or the patient. The doctor ought to be offering such advice on palliative care. The patient may or may not decide to take the doctor’s advice on palliative care, but they have had it, and the patient may well benefit from having had advice on palliative care.

Given the conversations we had this morning, I can foretell one objection to this amendment: that since good doctors will do this anyway, it is unnecessary to have a provision on the face of the Bill to ensure it. This seems to me a very weak objection. Let us be honest, the doctors that we have in this country are of extremely high quality. They are dedicated, skilled and compassionate men and women. We are lucky to have them, but we cannot say that every doctor participating in all the processes that they currently undertake always follow best practice.

Similarly, we simply cannot say that in any assisted dying process doctors will always automatically follow best practice. People make mistakes. That includes people who are highly trained and extremely compassionate. I would be astonished if we could find a doctor who said they had always got everything right. As lawmakers, we have to guard against the fact that even some of our most admired professionals can and sometimes will make mistakes. One way that we will guard against that is to set out duties that they have to follow. This amendment does just that.

I hope that we will not hear the objection that we have heard to a great many good amendments: that it will somehow make the Bill more dangerous by adding complications. The amendment simply adds a small step, by placing a duty on a doctor to give palliative care advice to a patient with a diagnosis of serious illness. Surely the Bill cannot be so lacking in robustness that such a small change would make it dangerous.

In summary, the amendment is a sensible change. It would in no way block the ability of adults who meet the conditions set out by this Bill to explore assisted dying, nor would it place any burden at all upon doctors. It would simply place upon them a duty to follow what we can all surely agree is best practice, and it would greatly improve the early access to palliative care advice for patients with a diagnosis of serious illness. That would improve those patients’ chances of receiving good palliative care. I therefore urge hon. Members to support the amendment.

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[Kit Malthouse]

I understand that, but amendment 126 also refers to a register of appropriate medical practitioners being maintained. Of course, new clause 7 would similarly create such a list. We are debating all three proposals, so I wanted to explain why I oppose them, as indeed the BMA does.

As has been outlined in previous speeches, the Bill creates an opt-in model effectively, whereby people who want to be the co-ordinating doctor or indeed the second doctor have to opt in and be trained, and therefore become accredited, so by definition they would be approved for that service.

However, the Bill does not envisage that the initial conversation is necessarily with the co-ordinating doctor. There might well be other medical personnel or practitioners—we have talked a lot about semantics in this debate—who are presented with the situation where a desperate person, somebody who has been given some extremely bad news, wants to talk about their situation and what their options might be. We hope and believe that training will spread throughout the NHS to those who want it. Nevertheless, we have to leave open the option that someone may not be accredited and that they may need to pass on someone, by whatever means the Bill determines, to a doctor who is accredited, who can act as the co-ordinating doctor, who has had the appropriate training and opted in, and I am afraid the register would not allow for that.

The second thing that concerns me slightly, and which we need to avoid for the benefit of both the patient and the system, is any kind of “doctor shopping”—the notion that there is a list of doctors that I can shop around and choose from. I worry slightly about that.

My hope is that these types of conversations, which are necessarily private and sensitive, will take place in an environment of embrace and familiarity between doctor and patient. We have talked a bit about whether doctors have to refer or provide information—obviously, we have just accepted an amendment that seeks to set out how that will work. What I would oppose, for two reasons, is the creation of a list that people can move up and down on, and pick somebody they like the look of, or who they think might be handy for them. First, I am not sure that it would be entirely reputable; secondly, we have to remember who we are dealing with here. These are dying people who may not have long left to live—we are talking about six months as a minimum, but actually they might have only two or three months to go. We need to create a sense that this is something that will be provided to them in an environment that is familiar. They will not have to spend their time finding a doctor on a list, and their phone number, then ringing up their office and saying, “This is what I want to do. Can I make an appointment?” There is a privacy aspect to it.

My third objection is, to be honest, about privacy—not just that of the patient, but that of the doctor. The hon. Lady will know that unfortunately—I do not know whether she thinks it is unfortunate, but I do—there are some people who object so strongly, for example, to abortion that they are willing to go and protest outside clinics that provide that service. This House has legislated to balance the rights of those who want to avail themselves of that service and those who want to protest. That has been a source of conflict.

I am afraid that a public list of doctors who provide this service would raise questions about the privacy of doctors, about patient privacy and about access to that service. I am concerned about it from that point of view.

[Naz Shah]

I hear what the right hon. Member says, and I get his point, but we already have lists of specialists. With Choose and Book, for example, although it is for treatments, the NHS provides a list of doctors, so why would this be any different?

[Kit Malthouse]

We do not necessarily have specific registers. People are members of professional bodies, and within those professional bodies, people become accredited because of their training. As the Minister referred to earlier, there is no such thing as a list of palliative care specialists; it is not defined in that way. Creating a list in this way would present problems for the privacy of doctor and patient as they go about what I hope we all acknowledge is a very sensitive and private process at the very end of someone’s life. I will conclude at that point and say that, unfortunately, with great respect to the hon. Member for Broxtowe, I oppose these amendments.

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[Naz Shah]

I rise briefly to put on the record my disappointment. In our debates today on various amendments, we have discussed how some patients could see doctors’ language as a suggestion rather than an option. I make no apologies for the fact that I said that this could be the next Horizon scandal or the next infected blood scandal. I struggle with that.

A chap called Nick Wallis, who exposed the Horizon scandal, said something pertinent that I want to put on the record. He said that the difference is that there will not be anybody else left to campaign—

[The Chair]

Order. I am genuinely trying to provide as much latitude as possible, but the Question before the Committee is whether the clause stands part of the Bill.

[Naz Shah]

Thank you, Mr Dowd. I will not oppose clause 4 stand part, but I put on the record my disappointment that we did not go further by putting in the safeguards that we had the option to add.

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[The Chair]

I apologise to the Member, who was within his rights to speak to amendments 403 and 404.

[Naz Shah]

I rise to speak to my amendment 277, which would add a new subsection to clause 5. Like my amendment 276, it would alter the time that must elapse between a person receiving a diagnosis of severe illness and their discussion of assisted dying with a medical practitioner. To put the most important point first, the amendment aims to prevent people opting for assisted dying while they are suffering from the initial shock of having a serious illness diagnosed, by imposing a pause. There would have to be 28 days between when a person receives a diagnosis and prognosis of the illness that might end their life within six months, and when they could have their second consultation with a doctor about assisted dying.

The right hon. Member for North West Hampshire asked me whether I was aware of pancreatic cancer. A dear friend of mine, who was known as the “king of curry” in Bradford, told me only in June—the day I launched my election campaign, funnily enough—that he had been diagnosed with terminal cancer. In October, he was gone. I am overly familiar with pancreatic cancer and how fast he went down from being a healthy individual. He is greatly missed in Bradford.

The Committee has already rejected amendment 276. I ask all Members to think again and in particular to consider the evidence given to us by several distinguished doctors, including senior psychiatrists. What those doctors said to us, in both written and spoken evidence, was that immediately after someone receives a diagnosis of serious illness they often experience a major increase in depression and a desire to hasten death. For some patients, that desire to hasten death is what psychiatrists call an increase in suicidality; that is, the patient wants to actively do something to end their own life. For other patients, they do not have an active desire to carry out a physical act to end their life, but they do wish that their life would end sooner.

We can all empathise with people who have just received such a shocking diagnosis and prognosis. They have been told that they are likely to die soon. They may also either have been given information that makes them think their remaining months of life will be degrading and painful, or they may assume that they will be. That might well be how many of us would think if we had such devastating news. But the psychiatrists who gave evidence also said that depression and a desire for death are often not permanent conditions for people who have received such a diagnosis. When a patient gets treatment for their physical symptoms plus social care, and if necessary psychological treatment, the desire to hasten death will often fall.

Let me refer to the evidence of Dr Annabel Price, vice chair of the Royal College of Psychiatrists Liaison Faculty. I appreciate, Mr Dowd, that I am repeating some things I have mentioned previously, but when I spoke previously with reference to this evidence it was to other amendments. Hence, I am having to repeat it for the purpose of this amendment in particular. She said:

“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.”

She said that there were a number of factors besides depression that were associated with the wish to hasten death. In those who had received a diagnosis of serious illness, she told us:

“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.”

For patients who have all those factors, she said:

“These things can all come together to make life feel very unbearable.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275, Q359.]

Perhaps the most important part of Dr Price’s evidence was when she said what good medical and social care could do for people who felt their lives were unbearable. She said:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281, Q369.]

[Kit Malthouse]

On a point of order, Mr Dowd. I am very sorry, but I just want your guidance. The hon. Lady is giving a speech which I am afraid we have covered before. We have had extensive debates on the impact of terminal diagnosis on people’s mental health and depression. I just want your guidance on what the Committee should do to resist the temptation to repeat debates that we have already had extensively, while we are considering these amendments.

[The Chair]

I thank the right hon. Gentleman for that point of order. I reiterate the point I have made on a number of occasions. I do not want to interrupt Members when they are making a point, because we are in a very sensitive situation—of that there is no doubt. I exhort Members, when they are discussing these things, to bear in mind those factors and those issues.

[Naz Shah]

Thank you, Mr Dowd. Before I carry on, may I just add to that? I did refer to that and I appreciate the right hon. Gentleman’s point of order, but these things speak to this particular amendment on 28 days. While they speak to many other debates, the Committee will have no doubt that there are many issues in which one piece of evidence crosses over many amendments. I assure the Committee that my intention is just to draw attention to the evidence that is related to the particular amendment that I am speaking to. I appreciate there that there is huge repetition—for want of a better word—but I feel that it is necessary, unless advised otherwise. I would be happy to take your guidance, Mr Dowd.

Terminally Ill Adults (End of Life) Bill (Thirteenth sitting)

Naz Shah Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

Before we adjourned, I was talking about the two obvious problems with amendment 181. The first is that it would remove references to the Equality Act 2010 and the Mental Health Act 1983, which previously defined who did or did not have a disability or mental disorder. The amendment would remove those definitions, and the Bill would not define disability or mental disorder. What definition would medical practitioners, and indeed applicants, use to determine who does and does not have a disability or mental health disorder?

I appreciate that, as my hon. Friend the Member for Spen Valley explained, that was done on the basis of advice she took to remove the references to the Equality Act because people with cancer could also declare themselves to be disabled people. However, that leaves a real opening, which weakens the clause even further. I cannot understand why we would remove one clear definition but not provide a replacement. That is a serious concern.

However, there is a bigger problem with the clause as it would be changed by my hon. Friend’s amendment. In referring to someone who could not be disqualified from assisted dying, the clause would still use the word “only”—again, I emphasise the word “only”. That leaves the door open for individuals with mental health disorders or disabled people to qualify for an assisted death based on the physical consequences of their condition. If the goal is to prevent people with mental illness or disabled people from qualifying, this amendment fails to do that. It weakens, rather than strengthens, the Bill’s safeguards.

As we heard in oral evidence, there are now 60 documented cases of individuals with eating disorders who have died by assisted death internationally.

[Lewis Atkinson (Sunderland Central) (Lab)]

Does my hon. Friend accept that nearly all those cases were in jurisdictions whose schemes bear no resemblance to the one proposed in the Bill?

[Naz Shah]

I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.

[Sarah Olney (Richmond Park) (LD)]

Does the hon. Lady agree that it really does not matter what happens in other jurisdictions? The question is, does this legislation prevent people who are currently suffering from anorexia from seeking an assisted death or not?

[Naz Shah]

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.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

The amendments before us have left me in a significant quandary, as some Members are aware. I am concerned that while their proposers are genuinely seeking to improve the Bill, legal loopholes may remain.

Prior to Second Reading, the Equality and Human Rights Commission produced a briefing note on the Bill. It included a section relating specifically to discrimination and equality considerations, which stated:

“It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.”

I note that amendment 181, tabled by my hon. Friend the Member for Spen Valley, seeks to clarify these matters, but I remain concerned that, with its reference to

“only because they are a person with a disability”,

it would retain the ambiguity that she is seeking to remove. I understand the legal advice that she has received on this matter. My view is that although the amendment would remove the reference to the Equality Act, that Act still sets out that disability is one of the specified protected characteristics. Paragraph A9 of the Government’s guidance on the Equality Act reads:

“The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means that the person is protected by the Act effectively from the point of diagnosis.”

I remain concerned about this point. I have previously raised my concerns about the language used on Second Reading and, if I had spoken then, I would have raised this point. We have heard throughout the Bill’s passage that being a disabled person does not make someone eligible for assisted dying, but I have just diagnosed three disabilities in the Equality Act that may or may not be eligible under this Bill.

--- Later in debate ---

[Naz Shah]

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?

[Kim Leadbeater]

My apologies; I am speaking to amendments 399, 400 and 401. I will be happy to come back to that point at the appropriate time, but I first want to finish my comments on those amendments.

As I have said, the hon. Member for East Wiltshire has done a good job this morning of improving the clarity of the issue. That shows that the Committee is doing its job and working effectively. I am therefore open to supporting those amendments.

--- Later in debate ---

[Rebecca Paul]

I am sharing the content of written evidence. People working in this arena—medical professionals and clinicians—have taken the time to submit written evidence, which suggests that they see a risk, so this is something that we need to think about. The hon. Gentleman could be right when he asks why someone would seek assisted death in that situation, but it is more about if someone technically qualifies. Obviously, we are still yet to get through the Bill, and there is lots for us to debate, but we want to ensure that people are not put on that pathway if they are not actually terminally ill and their condition can be managed. People could be in a low place, and we need to provide support. This comes back to my point about the balance of best interests. It is really difficult to set the right level, but we need to think about best interests and protect people at their lowest point.

In Oregon, conditions such as anorexia, diabetes, arthritis and hernias have qualified for assisted death, not because they are inherently fatal but because treatment was refused or was unaffordable. We also need to think about situations such as supply chain issues with certain treatments. Situations that we do not want to happen could arise, and we need to think about what that means for this Bill.

Some lawyers and doctors in the US have advised patients on how to bypass the terminal illness criteria by refusing food and water until they become terminal—we have talked about that quite a lot today. There is some evidence of that happening. Cody Sontag, an Oregon woman with early-stage dementia, had few symptoms and was not eligible for assisted death, but after she refused food and water for a few days, her doctor ruled that she met the six-month prognosis requirement.

It is important that we carefully consider young women suffering with eating disorders, but I appreciate we have spoken about that group a lot today, so I will be brief. In Chelsea Roff’s evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide where anorexia nervosa has been listed by name as a terminal condition. In 100% of the cases, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. Roff said,

“I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions…they had decades of life ahead of them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 139, Q175.]

UK courts have already ruled that treatment can be withdrawn from young women with anorexia, acknowledging that the likely result will be their death, after doctors framed their condition as terminal or untreatable. These examples powerfully demonstrate why it is vital these amendments are accepted, so that these conditions do not lead to a person qualifying for assisted death, if they can be managed sufficiently with treatment. In oral evidence, Dr Miro Griffiths asked us,

“What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 142-143, Q179.]

In written evidence, Pathfinders Neuromuscular Alliance warned that for those with conditions like muscular dystrophy, access to treatment is essential. It said,

“It would not be unreasonable therefore to suggest an individual with neuromuscular respiratory failure could die within six months—and yet they might also live 20 to 30 additional years in this state.”

In written evidence, a group of leading physicians and researchers, including experts from John Hopkins University and the Royal College of Psychiatrists said,

“The Bill’s definition of terminal may not adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care.”

They added,

“Under this Bill, patients with incurable but treatable conditions could become terminal if they are unable to access timely treatment or choose to forego life-sustaining care.”

It is therefore vital that the definition of terminal illness is tightened to avoid unintended consequences. These amendments would ensure that the Bill applies only to those who are generally at the end of life, without prospect of recovery. I urge the Committee to give consideration to accepting them.

[Naz Shah]

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.

--- Later in debate ---

[Dr Tidball]

Just to clarify, I will not be supporting that amendment.

[Naz Shah]

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.

[Kim Leadbeater]

We need to be fair to the hon. Member for Harrogate and Knaresborough, who has said that he will not press the amendment to a Division. Indeed, it would not be something that I would support if he did do so, for the reasons that my hon. Friend has stated. I also think that we need to give him credit for ensuring that the voices of people with neurodegenerative conditions, such as MND, Parkinson’s and Huntingdon’s, are heard. They are an important part of this debate, whatever our views might be on the tightness that is needed in the Bill.

[Naz Shah]

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.

[Jack Abbott]

Just as a point of clarification, I remember asking one of the witnesses at our oral evidence sessions about this very issue—Sir Nicholas Mostyn, an esteemed judge who has written and spoken about the issue extensively. We asked his views about neurodegenerative diseases and extending the time to 12 months, so it was something that we were aware of and discussed as a Committee. In fairness to the hon. Member for Harrogate and Knaresborough, it has not come completely out of the blue.

[Naz Shah]

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.

[Tom Gordon]

I find this a little bit baffling, because we had a comprehensive list of witnesses that we were able to circulate in advance. The format in which those oral evidence sessions were held was really helpful and informative. We were able to ask questions, and as the hon. Member for Ipswich mentioned, we were interacting with people and families. We heard from Pat, who gave oral evidence about his sister who had to go to Dignitas. Again, it was not just a small figure; a number of people brought this issue up. Could the hon. Member reflect on that?

[Naz Shah]

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.

[Sean Woodcock (Banbury) (Lab)]

I think we all accept that prognosis is quite difficult, but one reason why I think this is fundamentally important is that a member of my constituency Labour party was given a prognosis of 12 months in 2012. Last year, they were out delivering leaflets for me in the general election. That is why it is so important that we make sure we get this right. I am sure that my hon. Friend has examples of her own. Is that what is guiding her to press this amendment?

[Naz Shah]

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.

[Dr Opher]

I must admit that I rejoice in these stories—it is fantastic that these things can happen—but shall we just outline exactly how the Bill will work? If you are given a prognosis of six months by a doctor and you decide that you want to—

--- Later in debate ---

[Naz Shah]

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.

[Kim Leadbeater]

My hon. Friend is making a powerful speech and it is good to have this debate. May I ask her opinion on two things? One is that, as my hon. Friend the Member for Stroud has alluded to, the research around the world shows that between 30% and 40% of people who sign up for assisted death never actually do it, because they do get better or because the treatment makes their condition manageable—or because they have a death in a different way. What are her thoughts on that? The other thing to point out is the number of people who we know, sadly, are taking their own lives because they are terminally ill at the moment. I go back to the point that I make quite regularly: no one is monitoring that—

[The Chair]

Order. As I said before, these are interventions seeking clarification. They are not mini-speeches.

[Naz Shah]

I thank my hon. Friend for her intervention. If we take that 30% to 40% figure, and the figure—she might correct me if I am wrong here, and I am happy to be corrected—that there are about 600 people on average going to Dignitas, for example—

[Kim Leadbeater]

It is people taking their own lives.

[Naz Shah]

Sorry—would my hon. Friend like to intervene?

[Kim Leadbeater]

Just to clarify, my understanding is that it is between 600 and 700 people who take their own lives; it is suicide.

[Naz Shah]

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.

[Jake Richards (Rother Valley) (Lab)]

Can my hon. Friend clarify for me what she means by “reasonable certainty”, and how that differs from the clause as drafted? Can she also explain why, in her amendments, normal language around the burden of proof, such as “on the balance of probabilities” or “beyond reasonable doubt” is not used?

[Naz Shah]

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.

[Kit Malthouse]

It is the other way around.

[The Chair]

Order.

[Naz Shah]

Thank you, Mr Dowd. I have it in evidence and I am happy to provide the reference.

[Kit Malthouse]

My understanding is that it is the other way around. In all but one case, force-feeding was decided by the courts. In the case the hon. Lady is referring to, L, the court did wrestle over that particular issue and realised that, such was the advanced stage of the patient’s condition and the complexities of force-feeding, it could not quite bring itself to authorise it. My understanding is that in all bar one case force-feeding has been authorised.

[Naz Shah]

Actually, it was the other way around and I am happy to provide a reference to the right hon. Gentleman. Nine cases found lack of capacity, but still not in the best interest. One of the girls was 19 years old. The judge found that they lacked capacity to make decisions about their treatment. The question of whether they had the capacity to decide to end their life is completely different and not something we have asked judges to rule on before. The judge’s ruling clearly implied the capacity to refuse force-feeding even if it resulted in their death. I am happy to provide the references for that. It was against their best interest to force-feed them. Tragically, in nine of the 10 cases the judges accepted that that would inevitably lead to the deaths of those young girls.

My hon. Friend the Member for Spen Valley has repeatedly stressed that her Bill is modelled on the Death with Dignity law in Oregon.

[Kim Leadbeater]

Actually, I have not said that.

[The Chair]

Order. With the greatest respect to Members, this is not a dialogue; this is a debate. This is not chit-chat. It is a very serious issue and interventions of that nature are not helpful.

[Naz Shah]

I am happy to correct the record.

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[The Chair]

That is ultimately a matter of opinion. If the hon. Lady wishes to ask the hon. Member for Bradford West a question and get clarity from her, that is fine, but this is becoming a dialogue. People cannot hear what is being said. I want the Committee to be run in an appropriate fashion. We have rules of debate in the House and I am trying to apply them. Otherwise, there lies perdition and chaos.

[Naz Shah]

I am happy to withdraw that comment, given the welcome intervention of my hon. Friend the Member for Spen Valley. When intervening on me in a previous sitting of the Committee, she stressed that most of the assisted deaths of people with eating disorders took place in the Netherlands and Belgium. The survey that Ms Roff and her colleagues carried out did find that the Netherlands and Belgium had more assisted deaths of people with eating disorders than Oregon, but it also found that Oregon itself had more than one such case. California and Colorado have also accepted people with eating disorders as subjects for assisted death. I remind hon. Members that, as I noted earlier, Oregon has a considerably smaller population than England and Wales. In 2023, the last year for which we have full data, Oregon had a population of just 4.25 million. By contrast, England and Wales had a population of 60.85 million—more than 14 times higher.

Perhaps it is the case that Oregon has had two assisted deaths for anorexia sufferers, as one witness told the Committee. In England and Wales, we have 14 times the population of Oregon. If it became legal for sufferers of advanced-stage anorexia to take their lives by assisted dying, we would almost certainly have more cases than Oregon.

[Dr Opher]

Does my hon. Friend not believe that an eating disorder is reversible? Under the Bill’s provisions, if someone has a condition that can be reversed by treatment, they would not be appropriate for assisted dying. Is she saying that eating disorders are not reversible?

[Naz Shah]

Absolutely not. That is not the point that I am making. Eating disorders are reversible, but it has been found that where this kind of legislation has been enacted, across the globe, somebody who has anorexia and decides not to eat then falls within the scope of assisted dying because it becomes a terminal illness.

[Danny Kruger]

I do not want to cut off the hon. Lady in full flow, but I want to echo her points. The hon. Member for Stroud has made his point before and we have had an exchange on it. There is quite a lot of research, to which I refer him, that shows how people in the UK, being treated by the NHS, are having diagnoses of terminal anorexia. It is happening. I refer him to Professor Agnes Ayton, the campaigner Hope Virgo and the eating disorders all-party parliamentary group in this place, which is looking at that. It seems bizarre to us, because of course someone can resume eating, but the fact is that anorexia is treated as a terminal illness in parts of the NHS today.

[Naz Shah]

I concur with the hon. Member’s remarks.

[Dr Opher]

Actually, there is a lot of debate about whether terminal states of eating disorders actually exist or not, so they cannot be said to be a real thing in that way. Some people in the profession think they certainly do not exist, so I would contest the point made by the hon. Member for East Wiltshire.

[Naz Shah]

I thank my hon. Friend for his intervention, but the truth of the matter is we have 10 cases that have gone to the Court of Protection. In nine of those 10 cases, judges ruled that the young people—women and girls, one was only 19—did have the capacity not to take treatment.

[Kit Malthouse]

Just to clarify, what I said earlier was slightly incorrect—I misread my briefing. While the hon. Lady may be right that the court decided not to proceed with force-feeding, a number of those applications were by the individual to stop the force-feeding. While the court decided that, on balance, that was the right thing to do, in all those cases since 2012 the individual was not found to have capacity to make decisions about their own condition; the decision was made by the court for them. That means that, under the terms of the Bill, they would not qualify. Some of those cases were quite complicated. A number of them, as I read it—

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[The Chair]

To some extent, there is an issue here of repetition. Standing Order No. 42 gives me the power to stop potential repetition. I do not want to use it—I do not want to interfere with the debate—but I am afraid we are getting to the point of repetition. If I need to invoke Standing Order No. 42, I will.

[Naz Shah]

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.

[Kit Malthouse]

I stand to be corrected, but my understanding is that in the seminal case that the hon. Lady is talking about, the case of The NHS Trust vs. L, the court decided not to force-feed L because the prognosis was that force-feeding would precipitate her death.

[Naz Shah]

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.

[Sarah Olney]

I rise briefly to speak against amendment 234 in the name of my good and hon. Friend the Member for Harrogate and Knaresborough. I will keep it brief as I know he is not going to press to a vote.

First, the Bill that was voted on on Second Reading was a Bill for terminally ill adults in the last six months of their lives. I do not believe attempting to amend the scope of the Bill in Committee is what the House has asked us to do. I think the House voted for a Bill that was specifically for people within the last six months of their lives and that to be amending it—although I accept he is not putting it to a vote—is not in order.

Secondly, I want to reflect on Professor Sir Chris Whitty’s oral evidence to the Committee about how difficult it is to determine when somebody is within six months of the end of their life and how much more difficult it would be to determine whether someone is within the last 12 months of their life, notwithstanding that we are talking about a very specific category of people. For me, that really does give rise to the fear that we would not be able to make a specific determination on whether somebody was in the last 12 months of their life. There would be a risk that people actually have many years left to live. In the case of motor neurone disease, for example, we have seen prognoses of between two and five years, so we risk shortening people’s lives unduly. Furthermore, people might not want to make the prognosis, and therefore people who would like to have the right to end their life in their final 12 months because they have a neurodegenerative disorder might be denied that right, because it is impossible to come to such a determination.

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[Danny Kruger]

I accept that, which is why amendment 282 is probing only. It is trying to demonstrate the point. I recognise that even the expedited process is likely to take up to a month to get through, so that would be difficult. Nevertheless, if our intention is to restrict this to people who are literally in their last days, which is frequently what we hear, I think it would be appropriate to restrict the time.

[Naz Shah]

The hon. Member talks about the amendment being probing. Does he know why we went for six months? Was it was based on research? I am not sure whether he is aware or can help me understand that.

[Danny Kruger]

I am not. I think we have allowed six months to creep into common legal parlance because of the Social Security Contributions and Benefits Act 1992; we now recognise in law that it is possible to have certain rights and entitlements on the basis of a six-month prognosis. I presume that is the basis of it. It does feel like a reasonable period, and I understand the rationale for it, but given the difficulty of prognosis and the intense seriousness of what we are doing, I think it is inappropriate and dangerous.

Another way of achieving greater safety—less precise but perhaps more generous to people who want an assisted death—is to tighten the definition of terminal illness to mean those whom doctors think it is reasonably certain, rather than reasonably expected, will die within six months. That is the intent of amendment 48 tabled the hon. Member for Bradford West. The amendment also insists that the condition is terminal even with “all recommended treatment”, so that somebody could not make themselves eligible by refusing treatment. That is a very important point that the hon. Lady is trying to insist on.

By the way, that does not mean—and I hope people will not conclude that it does—that someone is required to have every treatment that might be possible, including invasive and unpleasant chemotherapy. The point is that it would have to be treatment recommended by the doctor: if the doctor recommends it, then it is appropriate. A doctor might be offering chemotherapy, but they would not be recommending it in all circumstances.

For the avoidance of doubt—an important phrase— I think that the hon. Lady’s amendment 402 is very important too. Just in case nutrition is not seen as treatment—perhaps it is arguable that it may not be—it is very important that we specify explicitly that declining food or drink does not qualify someone for an assisted death.

[Naz Shah]

Does the hon. Member agree that one point that is really important in this afternoon’s debate is that a person has a right to refuse treatment, and indeed food and water, if they have capacity, but that malnutrition is practically reversible? The argument has been made by doctors in Oregon around the voluntary stopping of eating and drinking that doctors cannot legally force a person with capacity to eat, and if they refuse food, their condition can be considered irreversible and terminal. That is the crux of the point. Does he agree with me?

[Danny Kruger]

I think so. The hon. Lady is absolutely right that there is this difficult loophole that somebody may have capacity and be refusing food and drink and would therefore potentially be eligible. In the Bill as it stands, we have an expedited process for people whose prognosis is only a month. There, the 14-day waiting period could be reduced to just 48 hours. If a person stopped eating and drinking, their death would almost certainly happen within a month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. It is very important that we recognise that and explicitly exclude it.

I will refer quickly to other jurisdictions where this specific situation occurs and the voluntary stopping of eating and drinking is used to qualify for legal drugs. A peer-reviewed article in the Journal of the American Geriatrics Society discusses this case—it may be the one referred to earlier. The authors noted that if anyone can access VSED—voluntary stopping of eating and drinking—then anyone can qualify for medical assistance in dying. In Colorado, 12 people qualified for assisted suicide based on a diagnosis of severe malnutrition.

The American Clinicians Academy on Medical Aid in Dying, an organisation of doctors who provide assisted suicide, acknowledges this loophole. Its guidance states that

“there is nothing in the letter of the law”

to prevent voluntary stopping of eating and drinking from being used in this way. It adds that that would

“essentially eliminate the criteria of terminal illness,”

because a person could always qualify as having terminal illness if they stopped eating and drinking. That is obviously not what the Bill’s sponsor and drafters wish. I hope they will consider accepting the amendment to close that loophole.

I will not repeat points made very eloquently by my hon. Friend the Member for Reigate, but I echo the need to ensure that the Bill is not for conditions that, although they cannot be reversed by treatment, can nevertheless be controlled or substantially slowed. I will therefore support the amendments in the name of my hon. Friend the Member for South Northamptonshire.

I pay tribute to the hon. Member for Harrogate and Knaresborough and to the people he speaks for in tabling amendment 234. I recognise absolutely that the MND Association has pointed out that the six-month rule would not work for all MND sufferers. It successfully persuaded the last Government to change the rules on benefits in recognition of that point, and its evidence to us, it has requested a clear and workable definition for assisted suicide. It was not very clear on what that would be, and there are practical problems with extending to 12 months, specifically the one we have with six months—the difficulty of prognosis, which would be twice as bad. I also refer to the evidence from Professor Sleeman, who made the point that a non-neurologist would find it particularly difficult to make an accurate 12-month prognosis for MND.

The main reason to object to the principle of the amendment—I appreciate that the hon. Gentleman is not moving it, but it is an important principle to discuss—is that it makes no sense at all to have two different prognosis periods. Of course, we can see where it will go. The fact that the amendment has been tabled and selected, that it is in scope, and that people will support it in this Committee or beyond, or outside Parliament, is evidence of where things go. We saw it very clearly in the evidence we heard from witnesses from Australia, who pointed out that there is no logical reason to have two prognoses—one for cancer and one for neuro-degenerative disorders. Their response was, “Well, let’s make it 12 months for everyone,” and of course that is the way things would go.

I finish with a tribute to the great quixotic effort of my hon. Friend the Member for Runnymede and Weybridge, who is not on the Committee. Runnymede is the home of Magna Carta; the spirit of liberalism lives on in my hon. Friend, a genuine liberal who wants to scrap the period of prognosis altogether, because he genuinely believes in absolute autonomy. I have been trying to make the Bill live up to its claim to be a Bill for safeguarding; he wants it to live up to its claim to be a Bill for autonomy. In principle—in logic—he is absolutely right. If we think that some people should have access to suicide assisted by the state, then why should person A get it and not person B? Needless to say, I disagree with him.

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In some cases, a terminal illness progresses more slowly, and as we heard in evidence, prognosis is not an exact thing. If a dying person’s terminal illness progresses more slowly than might have been expected, they are delighted. They do not think, “Well, I have this approval, so I am going to access assisted dying anyway.” I feel like some of our debate has missed the essential humanity of people at the end of their lives, as though, just because people are able to do something, they will. That is as much about autonomy, dignity and respect as anything else we are talking about in this debate.

[Naz Shah]

My hon. Friend is making a powerful speech, and I agree with what he says about autonomy. As I said earlier, autonomy does not necessarily have to lead to pain, and it could be that I do not want to get to that stage. People will never know whether they could have lived longer. Does he not agree?

[Lewis Atkinson]

Sensible amendments have been tabled elsewhere in the Bill—not to the clause that we are debating—that would strengthen the initial conversations and ensure that people make informed decisions and have access to, and conversations about, all the forms of support, psychological or otherwise. I think that those will address my hon. Friend’s point.

In terms of the eligibility criteria, Chris Whitty was clear that there is diagnostic uncertainty in both directions. He said that

“a significant minority of people die before they actually get to the point”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q15.]

of the six-month prognosis. Because of that uncertainty, if we attempted to make the criterion much less than six months, we would end up excluding people. From all the conversations I have had, it is clear that once people have a terminal diagnosis, they want to put their affairs in order; doing so means that they can enjoy their final months with their families. We must not reduce eligibility and limit access to those whose disease unfortunately progresses more quickly than they would like and the prognosis suggests. I therefore oppose amendment 48, in the name of my hon. Friend the Member for Bradford West.

The amendment talks about “recommended treatment”. In all my years in the NHS, shared decision making has been a key principle. No one other than the person in question can make the decision about what trade-off they are willing to accept. Invasive chemotherapy may have a 20% chance of elongating my life. Am I willing to accept a 20% chance? Am I willing to accept a 30% chance? What I decide is right for me may be different from what other individuals decide, so a doctor is not in a position to say, “You should accept this because it will give you a 10% chance,” or, “It will give you a certain level of pain that I’m willing to accept.” We each have to make those decisions ourselves.

[Naz Shah]

Will my hon. Friend give way?

[Lewis Atkinson]

No, I will make some progress.

I feel that the amendment risks pressuring people to accept courses of intervention against their will, and I do not think it is consistent with the important principles of autonomy and consent. Because of the safeguards, approvals and reflection periods built into the Bill, going through the process of approval will clearly take in excess of a month. That is why amendment 282, in the name of my hon. Friend the Member for York Central, which would limit the eligibility to one month, is fundamentally not compatible with the safeguards in the Bill, as my hon. Friend the Member for Spen Valley made clear. To me, six months is absolutely the right balance. It reflects people’s wish to put their affairs in order and allows for prognostic uncertainty on the downside—someone given six months may actually only have two or three months to live—but it still allows the operation of robust safeguards and reflection periods.

I turn briefly to the other amendments. I commend my hon. Friend the Member for Broxtowe for the points she made. I share the concern that replacing “inevitably” with “typically” would risk weakening the definition of “terminal illness” and expanding access to other conditions. I fear that “typically progressive” is a weaker interpretation, so I cannot support the change, because I support a tightly drawn Bill with tightly drawn eligibility criteria. For the same reason, although I have sympathy for the amendment tabled by the hon. Member for Harrogate and Knaresborough, I think it goes beyond the scope of what the House discussed in November and the contours of the current debate.

Amendments 9 and 10 refer to disease being controlled or substantially slowed. Those are not recognised medico-legal terms. What is the definition of “substantially slowed”? Who would define it? Is it something that takes 20%, 50% or 100% longer? We talk about the risk of inserting undefined terms and of court interpretation, and I fear that introducing such an amendment would give rise to that.

The people best placed to make decisions about whether the treatment will suitably slow the progression of the disease are the dying people themselves. They are the only people who should do that—fully informed, of course, by their medical and clinical teams. Each of us, when the end is nigh—it will come to me, as it will to us all—has to make that decision ourselves, not on the basis of a recommendation mandated in law or some definition of “controlled” or “substantially slowed”. It feels that the legislature would be putting in primary legislation decisions that I should make about the treatment that I should accept, so I am not in favour of those amendments.

I finish with reference to amendment 402. Although earlier I wanted to make progress, I do not want to rule out any further interventions, if my hon. Friend the Member for Bradford West or others would like to come in. I recognise the concern, and we need to talk about people with anorexia with the respect, dignity and seriousness they deserve. I have heard it said—I think my hon. Friend said it—that there is nothing in the Bill to stop that being the case, and I fundamentally disagree for many reasons. First, as the Bill sets out, capacity is checked eight times. The Court of Protection has repeatedly found that people with anorexia do not have the capacity to make decisions about stopping eating. Although a best interest test may have been made, that is not relevant, as set out in the Bill. People have to have the capacity to request an assisted death, checked eight times. My hon. Friend the Member for Spen Valley has already set out that she is minded to accept—or will accept—amendment 6 to clause 9(3)(b), so that, if there is any doubt about capacity, a psychiatric opinion “must” be sought.

Like my hon. Friend the Member for Bradford West, I considered the written evidence saying that, in instances of a patient with anorexia, psychiatric input is absolutely necessary. Absolutely—in every case where someone has anorexia, under an amended clause 9, psychiatric opinion must be sought as to capacity. That is before we get to the further set of amendments to clause 12.

[Naz Shah]

In the cases that went before the court, the judges, in nine out of 10 cases, found that all those young ladies did indeed have capacity to refuse their food, and it was as a result of that that their deaths became inevitable. Will my hon. Friend comment on that?

[Lewis Atkinson]

That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.

Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.

I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.

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Amendment 282 is similar to amendment 48 but would require the co-ordinating doctor and the independent doctor to have “reasonable certainty” that a person can be expected to die in consequence of their inevitably progressive illness or disease within one month, instead of six months, even if that person were to undergo all recommended treatment. As with amendment 48, this carries risks of making the assessment of a person’s prognosis more complicated from the point of view of the assessing doctors. I have already set out why that can be challenging. It is an established principle that a patient with capacity must always retain the right to refuse treatment, if that is their wish.

[Naz Shah]

I apologise to my hon. Friend the Member for Sunderland Central; I was actually incorrect. The girls did not have capacity, so he was correct. However, in the cases that went before the court, those nine girls did not have capacity yet the judge made a decision that they should not be force-fed to keep them alive, and they should be allowed to die. Perhaps the Minister could comment on how the amendment would not meet that criteria. Would it fix that loophole?

[Stephen Kinnock]

I thank my hon. Friend for her intervention. I am just talking about the amendment to reduce the time from six months to one month. I will come on to the issue of eating and drinking in a second.

As amendment 282 would reduce the time within which the person is expected to die from six months to one month, it would also limit the number of people with a terminal illness who would be eligible for assisted dying under this legislation. Furthermore, there may be very challenging workability issues in delivering a service within one month, given the other time-dependent safeguards elsewhere in the Bill.

Amendment 51 would remove the requirement for the patient to have a six-month prognosis to be defined as “terminally ill”. If agreed to, it would expand the pool of people eligible for lawful assistance to voluntarily end their own life beyond those with a life expectancy of six months or less. In other words, it would remove the timeframe requirement of when death can be reasonably be expected.

Amendment 234 would widen eligibility to include cases of neurodegenerative diseases, illnesses or medical conditions where a person is reasonably expected to die within 12 months. Matters such as this are for the Committee, and ultimately for Parliament, to decide, but it is clear that the effect of the amendment would be to broaden the number of people eligible for lawful assistance to voluntarily end their own life under this legislation.

Amendment 10 would provide that, if treatment exists for a person’s progressive illness, disease or medical condition that alters the overall prognosis of that person’s condition, they are not terminally ill and would not be eligible for assisted dying services.

Amendment 402 would exclude a person who would not otherwise meet the definition of “terminally ill”—namely, being diagnosed with an inevitably progressive illness with six months or less to live—if that person meets that definition as a result of stopping eating or drinking. The effect of the amendment would be to prevent a person from being defined as “terminally ill” as a result of their own actions of stopping eating or drinking, or both. The Government’s analysis suggests that this may also exclude people who are terminally ill under the definitions of the Bill and who are, for various reasons, unwilling or unable to eat or drink. For example, it may include those with conditions such as oesophageal cancers, which could result in their being unable to eat or drink.

Furthermore, it is unclear whether someone who is on intravenous fluids or being fed through a feeding tube would be considered to have stopped eating or drinking under the amendment. I think that addresses the concern expressed by my hon. Friend the Member for Bradford West, but she is welcome to intervene again if she would like to. The amendment could therefore lead to uncertainty over the person’s eligibility for assistance under the Bill.

The Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. Questions around the definition of terminal illness and who should be eligible to access voluntary assisted dying under the legislation are matters for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee in considering the Bill and the amendments tabled by various Members.

Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Naz Shah Excerpts

Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Do either of the other witnesses want to come in on that?

Dr McLaren: When we started this in Victoria, we saw a bit of a gap with the implementation. A lot of the education was surrounding the legalities of providing an assessment service in a way that conformed with the legislation, rather than that focused on the clinical skills and applications. I am quite proud of the role that we have had in rolling that out, in providing that peer experience, and in focusing more on some of the clinical skills that apply within a VAD context.

[Naz Shah (Bradford West) (Lab)]

Q I have a couple of questions. Dr Fellingham, Victoria is quite a rural state and I imagine there are difficulties reaching all parts of it. Am I right that a state-wide pharmacy service that delivers assisted dying drugs across the whole state has been set up, but there is no comparable service for the delivery of pain reduction?

Dr Fellingham: A point of clarification: I work in Western Australia, rather than Victoria, but I can give you a view for Western Australia, which is significantly larger, so the problem you have alluded to is much more complicated. Would you like me to speak about the Western Australian context?

[Naz Shah]

I was talking about southern Australia, in particular. That is fine; we can move on. Thank you.

Dr McLaren: I can speak to the Victoria question, if you prefer. To answer your question, we have a state-wide service that supplies the medication across the state. Medication for pain relief is available through standard pharmacy access, so there are no barriers to accessing medication for palliative purposes in rural Australia. It is quite hard to get voluntary assisted dying medication dispensed to Mildura, which is many hours away from the single-state pharmacy, so access is more difficult for voluntary assisted dying than for palliative medication.

[Naz Shah]

Q Thank you. The Australian and British media reported the tragic story of Cyril Tooze, an elderly and terminally ill 84-year-old man in southern Australia, who requested voluntary assisted dying. Mr Tooze stated that he was applying for voluntary assisted dying after waiting nearly a year for the state government to implement a care and housing package for him. He died while waiting for the application process to end. How much does social detriment influence requests for voluntary assisted dying? Please speak from your own experience and about published data.

Dr Mewett: From a palliative care perspective, like Cam and Clare, I have been involved in assessing and having discussions with many, many patients who have requested assisted dying. These patients come from a whole range of socioeconomic backgrounds. In fact, if anything, they tend to come from a perhaps slightly higher, more well-educated background. There is no evidence in our jurisdiction of Victoria, where we have had five and a half years’ experience, that people who are underprivileged, less educated or vulnerable in some other way have readier access to or apply more for VAD.

The case you alluded to, like many cases that are reported from Canada, is certainly tragic in its own way, but such cases are an absolute minority compared with patients who are genuinely determined to have a choice about the way they die and when. Those are separate issues: one is a social welfare issue, and the other is a VAD issue. A patient such as that would not be found eligible, unless he was eligible under the strict criteria that apply in the state in which he lived.

Dr McLaren: As Greg touched on there, when that gentleman applied for voluntary assisted dying, that may have been one of his drivers, but it certainly would not have made him eligible. He did not access voluntary assisted dying, so the system worked. We do see higher socioeconomic status patients applying for voluntary assisted dying. That is evidenced in our Voluntary Assisted Dying Review Board reports, which show a greater proportion of people with higher levels of education. That data is freely available through the Victoria Government website.

[The Chair]

Dr Fellingham, you had your hand up.

Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are

“Loss of dignity, or concern about it…Loss of autonomy, or concern about it”,

and

“Less able to engage in activities making life enjoyable, or concern about it”.

What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.

--- Later in debate ---

[The Chair]

I think that is a matter that we may have to pursue elsewhere.

[Naz Shah]

Q I have a quick question for Dr Griffiths and then Chelsea. Dr Griffiths, how does the Bill exacerbate issues for disabled women in particular who might be experiencing abuse or other vulnerabilities?

Dr Griffiths: There is no indication of how you would place the infrastructure for support for people whose discrimination or injustice is exacerbated through an intersectional lens—for example, the cross-cutting of different experiences—and how that can be attested for within the Bill. For example, if an individual comes forward to discuss with their doctor their concerns, there is no infrastructure for how that would be acknowledged with an intersectional critique.

There is also a concern that many within disabled people’s communities from particular backgrounds, such as women, are pre-exposed to further levels of injustice that are not accounted for, and their experiences of trying to access support for certain aspects of their life are compounded by inequalities. These issues are not addressed by the Bill. In my view, if this mechanism becomes available, the issues that some individuals face in terms of injustice will play into the consciousness of their decision to go forward with this. I cannot think of any clause or amendment that would address that issue in its totality.

[Naz Shah]

Q Before I move on to Chelsea, I want to point out that Professor Shakespeare said that most disabled people’s organisations support the Bill, but that only one deaf and disabled people’s organisation that opposes it is giving evidence. I just wanted that point noted for the Committee.

Chelsea, thank you for your evidence. Eating disorders are classified as mental disorders under the Mental Health Act. The Bill explicitly states that a person cannot be considered terminally ill only because of a mental disorder. You have also talked about the withdrawal of insulin. Could you respond to both of these? Why do you believe that eating disorders would still meet the criteria under the Bill, and likewise for the issue of stopping insulin?

Chelsea Roff: There is a false distinction being made in the Bill between a mental disorder and its somatic or physical manifestations. Mental disorders, especially eating disorders—not just anorexia—impact the body, and have life-threatening consequences. We had 20,000 acute hospitalisations for eating disorders in this country last year, and we have massive gaps in care. Those are individuals who, if they were to choose to forgo treatment or could not access treatment because they were on a wait list for a long period of time, would qualify under this Bill.

I draw your attention to the evidence I submitted with Dr Agnes Ayton from the Royal College of Psychiatrists, and Dr Angela Guarda, a leading physician from John Hopkins University. I also draw you to our own case law in the Court of Protection where we have had physicians represent eating disorders as terminal conditions, as in the end stage of their illness.

I am grateful that you have drawn the connection to diabetes, because it is not just about eating disorders. Substance use disorders would have the same effect. Outside of mental disorders, HIV/AIDS is a progressive condition that cannot be reversed by treatment. Are you okay with a 19-year-old young man who decides to discontinue treatment qualifying under this Bill? Those are the questions you have to ask. I am not, in principle, against the Bill, but you have to look at the letters on the page, because they will be interpreted after the Bill is passed. Your constituents are depending on you.

[The Chair]

I am sorry, but we still have more Members and questions than we have time, so I am going to come down to one question per Member.