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

Kim Leadbeater Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Mr Dowd.

When we broke at 11.25 am, I was talking about amendment 108. Clause 4(4) sets out that a registered medical practitioner who conducts the preliminary discussion on assisted dying must, as part of that discussion, explain and discuss

“the person’s diagnosis and prognosis…any treatment available and the likely effect of it…any available palliative, hospice or other care, including symptom management and psychological support.”

Amendment 108 would supplement that with a requirement for the registered medical practitioner also to offer to refer the person to a specialist in palliative, hospice or other such care for the purpose of further discussion.

The amendment would add an additional level of specificity to the preliminary discussion on palliative, hospice or other care, but would not in itself place a duty on the registered medical practitioner to make such a referral, or on the person to accept it. In considering whether the amendment is required, the Committee may wish to note that the General Medical Council’s good medical practice already requires doctors, when providing clinical care, to refer a patient to another suitably qualified practitioner when this serves their needs.

As the Committee is aware, the Government have worked with my hon. Friend the Member for Spen Valley on several amendments to ensure that the Bill is legally and operationally workable and reflects her policy objectives. Amendments 183 and 424 are two such amendments.

The purpose of amendment 183 is to emphasise, not change, the existing provisions in the Bill that provide that the preliminary discussion held with the person by a registered medical practitioner must not discuss assisted dying in isolation. Rather, the discussion must reference the matters contained in clause 4(4), including

(a) the person’s diagnosis and prognosis…any treatment available and the likely effect of it…any available palliative, hospice or other care, including symptom management and psychological support.”

Amendment 424 seeks to clarify the meaning of “preliminary discussion” in clause 40, to align that with the description of the discussions in subsections (3) and (4) of clause 4. It is a drafting change. As per subsections (3) and (4), a preliminary discussion takes place between a person seeking the provision of assistance in accordance with the Bill and a medical practitioner, about the requirements that need to be met for such assistance to be provided. The preliminary discussion must include

“the person’s diagnosis and prognosis…any treatment available and the likely effect of it…any available palliative, hospice or other care, including symptom management and psychological support.”

Amendment 425 would introduce a requirement that a person seeking assistance under the Bill is referred to a multidisciplinary team to consider support and care for the person. The Secretary of State may provide regulations to determine what kind of professionals should make up such a team, but the amendment would require that at a minimum each team should include a medical practitioner or nurse, a social worker and a psychiatrist. The obligation to refer to the multidisciplinary team would apply each and every time

“a person indicates to a registered medical practitioner their wish to seek assistance to end their own life in accordance with this Act”,

so there could be multiple referrals. Finally, I note that the amendment might have wider resource implications, including for social workers.

Together, amendments 53 and 54 propose changes to clause 7—rather than clause 4, which we have been considering so far today—the effect of which would be that in carrying out the first doctor’s assessment, the co-ordinating doctor must, in addition to the other requirements, be satisfied that the person has relevant and available palliative care options. As such, the amendments would mean that people are eligible for assistance to voluntarily end their own lives only when they have relevant and available palliative care options. The amendments would create an additional criterion, which may reduce the number of people able to receive an assisted death, linked to the availability of palliative care services to any given individual.

Amendment 426 would prevent the co-ordinating doctor from finalising the first assessment process until they had received confirmation from a multidisciplinary team—as set out in amendment 425—that the person seeking assistance to end their own life had met with the multidisciplinary team. The Committee may wish to note that under the amendment there would be no requirement on the multidisciplinary team to provide that confirmation in a given timeframe. That might lead to delays in the co-ordinating doctor being able to make their statement and onward referral.

Amendment 286 would remove the requirements in paragraphs (a) to (c) of clause 9(2) and insert three new requirements. The three new conditions require the assessing doctor, for both the first and second assessment, to consult specialists in relation to the person’s diagnosis and prognosis, any treatments available and the likely effect of those treatments, and any palliative, hospice or other care, including symptom management and psychological support.

The Committee may wish to note that, as drafted, amendment 286 might have some unintended consequences. That is because by replacing clause 9(2)(a), (b) and (c), it would remove the words

“explain to and discuss with the person being assessed”

at clause 9(2)(b). Consequently, the amendment would remove the requirement for the assessing doctor to have a discussion with the person about the factors currently set out in clause 9(2)(b). The assessing doctors would also not be required to examine the person and their medical records, and to make other inquiries as they consider appropriate.

The amendment could also lead to a significant loss of essential discussion between the assessing doctors and the person seeking assisted dying. The removal of clause 9(2)(b) would eliminate the requirement to explain and discuss the diagnosis and prognosis, treatment options and palliative care. Additionally, the amendment would remove the requirement to discuss the person’s wishes in the event of complications arising in connection with the self-administration of an approved substance, which may be seen as important for fully informed decision making.

I thank the Committee for its attention.

[Kim Leadbeater (Spen Valley) (Lab)]

I will try to keep my comments as brief as possible because we have had another very thorough discussion. First, my amendment 424 is, as the Minister said, a simple drafting change in clause 40 that confirms that “preliminary discussion” means a discussion as per clause 4(3).

Amendment 275 from my hon. Friend the Member for Sunderland Central would, in many circumstances, broaden the scope of the conversation that the doctor would have with the patient, and I am happy to support it.

I am also happy to support the very sensible amendment 108 from my hon. Friend the Member for East Thanet (Ms Billington). It is perfectly acceptable to ask the doctor to offer to refer the patient to a specialist, as they would probably do in most cases anyway, but the amendment is for clarity.

I refer colleagues to the comprehensive comments on my amendment 183 earlier in proceedings, and also to the support of the British Medical Association. Following Second Reading, I listened carefully to Members’ concerns about the possibility of doctors only discussing assisted dying with patients. Even though the Bill states that that cannot be the case, for the avoidance of any doubt the amendment emphasises that the initial discussion mentioned in clause 4(3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4). Accordingly, such a preliminary discussion may not be conducted in isolation from an explanation of and discussion about the matters mentioned in paragraphs (a) to (c) of that subsection—that is, doctors cannot discuss the option of assisted dying in isolation but only in conjunction with discussion about all other available and appropriate treatment.

Indeed, Andrew Green of the BMA told us that

“some patients find it very difficult to bring up sensitive subjects with their doctors, even when those are the most important thing on their mind.”

He asked us to

“please do not pass legislation that makes it harder for doctors to understand their patients.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 42, Q24.]

That concludes my remarks.

[Danny Kruger]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 270, in clause 4, page 2, line 25, at end insert—

“(3A) Before conducting a preliminary discussion under subsection (2) the registered medical practitioner must ensure that the person has no remediable suicide risk factors which pose a significant risk to their life.”—(Danny Kruger.)

This amendment requires that the doctor ensures that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying.

Question put, That the amendment be made.

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[Stephen Kinnock]

I am happy to have that discussion, to better understand how it might all work in practice.

If amendment 415 is agreed to, it will mean that an assessing doctor making an assessment under subsection (2) must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters. As with amendment 414, the Committee may want to note the existing standards that all medical practitioners must uphold, which include requirements for the provision of adjustments for language and literacy barriers.

Amendments 416 and 417 would amend clause 30, which states that the Secretary of State may issue codes of practice on a number of matters, including on arrangements for ensuring effective communication and the use of interpreters. The amendments would impose a duty on the Secretary of State to issue one or more codes of practice in connection with arrangements for ensuring effective communication, including the use of interpreters, and to do so within six months of the passing of the Act. The requirement to issue any such code of practice within six months may prove unworkable. Under clause 30, it would be necessary to consult on the code of practice, make regulations to allow for the code of practice to come into force, have the regulations approved by both Houses of Parliament and then issue the code of practice, all within a six-month period after the passing of the Act.

As I have said, the Government will continue to remain neutral on whether or how the law in this area should change. As I have made clear, that is a matter for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to members of the Committee in considering the Bill and the amendments tabled to it.

[Kim Leadbeater]

On amendment 413, from the right hon. Member from Plaid Cymru—with apologies, I will not embarrass myself by trying to pronounce the wonderful name of her constituency—I am very sensitive to issues around devolution. We have had many conversations about it, which I am very happy to continue. The Minister has confirmed, as I understand it, the issue around the Welsh language, in that it would be covered by the Welsh language legislation, which states that individuals in Wales

“should be able to live their lives through the medium of the Welsh language if they choose to do so.”

I am very supportive of that. I am also happy to continue those conversations, where necessary, with the Minister.

I turn to amendments 414 and 415. I think several Members of the Committee have had the same message from my hon. Friend the Member for Ipswich, who was clearly struggling to get here on time. I, too, would be happy to move them in his name. They seem very sensible amendments, and I am happy to support them. Along with the GMC’s “Good medical practice”, which sets out the principles, values and standards of professional behaviour expected of doctors, it is a belt-and-braces approach to an issue that is very important, for reasons that several hon. Members have set out.

I cannot support amendments 416 and 417, however, because the timeframe that they would impose would not fit with the rest of the Bill. In reference to the two-year implementation period, that would just not be workable or possible.

[Liz Saville Roberts]

I will not press amendment 413, because I anticipate further conversations on these matters.

Amendment 414 agreed to.

Amendment proposed: 285, in clause 4, page 2, line 28, leave out paragraphs (a) to (c) and insert—

“(a) the person’s diagnosis and prognosis, in consultation with a specialist in the relevant illness, disease or medical condition,

(b) any treatment available and the likely effect of it, in consultation with a specialist in the provision of such treatment,

(c) any palliative, hospice or other care, including symptom management and psychological support, in consultation with a specialist in palliative care.”—(Naz Shah.)

This amendment ensures that a specialist carries out the assessment of the patient, the treatment options available and the palliative care options available, since these may not be known to a doctor coordinating an assisted death.

Question put, That the amendment be made.

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[Stephen Kinnock]

I will speak to this group of provisions as one, given that amendments 71 to 80 are consequential on new clause 4. The purpose of these provisions is to create a new statutory body—the assisted dying agency—which has the purpose of co-ordinating requests from people to be considered for assisted dying. The provisions provide for various functions and duties of the agency, including assigning a co-ordinating doctor and an independent doctor to a person seeking assistance to end their own life.

The agency would be responsible for accepting referrals, replacing registered medical practitioners with the roles of assigned co-ordinating doctor and assigned independent doctor, and receiving and recording declarations, statements and cancellations made by co-ordinating doctors, independent doctors and those receiving assistance under the Bill.

That would be a change from the current provisions in the Bill, which place a number of those duties on the individual co-ordinating doctor and independent doctor. One effect of the proposed new clause is that a new agency would have to be established by the Government. If it passed, we would have to work to assess how that might be possible in practice.

I hope my brief remarks are helpful to Committee members in considering the Bill, the amendment and the new clause.

[Kim Leadbeater]

I have nothing to add, other than to agree with the hon. Member for East Wiltshire; I do not think any of us on the Committee are keen on the implementation of the assisted dying agency.

[Danny Kruger]

Will the hon. Member give way?

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[Sean Woodcock]

Amendment 345 was tabled by my hon. Friend the Member for Shipley (Anna Dixon); I referred earlier to her record in this area. The amendment would ensure that medical practitioners record and document preliminary discussions with a patient about assisted dying and provide the patient with that information. I welcome the amendments from the Bill’s promoter to make records of the first and second doctor’s assessments. Those safeguard patients and the process. It is important that we have transparency and clarity on such weighty decisions.

Several people raised in their written evidence the importance of good documentation. These amendments meet those concerns. I assume that not including a record of the preliminary discussion is merely an oversight by the Bill’s promoter. The amendment seeks to do what she says she wants to do—protect patients and doctors—by making records of the discussions.

In written evidence TIAB55, Professor Allan House suggested that

“It should be required as it is in all other areas of medical practice, that specific written records are kept of this assessment and of procedures followed to end life—not just the substances used. The written record to be included in the person’s medical record so that it is available to the Medical Examiner. Records also to be available at appraisal to enable assessment of the quality of the process.”

[Kim Leadbeater]

I thank my hon. Friend for his comments. Will he take note of my new clause 19, which is in this group and states that the preliminary discussion has to be recorded?

[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.

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[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.

[Kim Leadbeater]

I might be wrong, but my understanding is that a patient could ask for access to their medical records at any point. On the basis that new clause 19 requires the doctor to record a preliminary discussion, presumably, if a patient wanted to see that record, they would be able to.

[Stephen Kinnock]

I agree with my hon. Friend on that point. As I stated at the start of my comments, officials have worked with her on new clause 19, which I think goes a long way to clearing up many of the points that have been raised, including hers.

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[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.

[Kim Leadbeater]

I rise to speak briefly to my new clause 19, which refers to the recording of the preliminary discussion. It would require the practitioner to include in the medical records of the person in question a record of a preliminary discussion under clause 4. The initial discussion with the patient is very important and, as such, should be recorded in their records. I hope that colleagues agree and will support the new clause.

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I therefore support amendment 341, which seeks to remove the requirement to refer and replace it with an obligation to direct the patient to where they can obtain information and have the preliminary discussion. The amendment is in line with the written evidence we have received, so I hope that some Committee members will join me in supporting it.

[Kim Leadbeater]

I thank the hon. Member for those important points. I reassure her, and possibly other Committee members, that I am minded to support amendment 341.

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[Stephen Kinnock]

Amendment 412 would remove the duty in clause 4(5) on a registered medical practitioner who is unwilling or unable to conduct the preliminary discussion to, upon request, refer the person to another practitioner whom the first practitioner believes is willing and able to conduct that discussion. Guidance for medical professionals requires that, where a practitioner objects to performing a procedure, they must refer the patient to a practitioner who can meet their needs.

Amendment 341 removes the duty on a registered medical practitioner who is unwilling or unable to conduct the preliminary discussion to, upon request, refer the person to another registered medical practitioner whom they believe is willing and able to conduct that discussion. The amendment requires the registered medical practitioner who is unwilling or unable to conduct the preliminary discussion with the person to instead ensure that the person is directed to where they can obtain information and have the preliminary discussion.

New clause 13 would introduce a requirement for the Secretary of State to create, via regulations, an independent information and referral service for individuals who are, or may be, eligible under the Bill for assisted dying services. The accompanying amendment 338 would require a registered medical practitioner who is unwilling or unable to conduct the preliminary discussion to direct the person, upon that person’s request, to another registered medical practitioner or to the information and referral service, as set out in the new clause. The effect of this amendment is to remove the obligation in clause 4(5) for the registered medical practitioner to refer the person to another registered medical practitioner whom the first practitioner believes is willing and able to conduct the initial discussion. This amendment would make it more likely for a person seeking assistance to be referred to someone who is unwilling or unable to help. In addition, these amendments could carry an operational impact, as the new service would need to be designed and brought into existence.

Amendment 287 would mean that, if the first practitioner is unable or unwilling to conduct the preliminary discussion, they must, upon request, refer the person to a registered medical practitioner who is qualified to undertake the preliminary discussion. They must also set out palliative medicine options to provide the patient with appropriate end-of-life care, including referring the person to a palliative medicine expert. This amendment removes the duty in clause 4(5) to refer to a practitioner whom the first practitioner believes is willing and able to conduct the preliminary discussion.

As with previous amendments, this language could make it more likely for a person seeking assistance to be referred to someone who is unwilling or unable to help. It is not clear what

“qualified to undertake such a preliminary discussion”

is intended to mean. In addition, the term “palliative care expert” is not a defined term. Palliative medicine is a designated speciality of the General Medical Council and a doctor can apply to be entered on to the GMC specialist register for this speciality, provided they have the specialist medical qualification, training or experience. I hope these observations are helpful, and I thank the Committee for its attention.

[Kim Leadbeater]

I rise to speak to amendments 341, 338 and 412 together, and I welcome the debate on these important amendments. Choice is one of the key tenets of the Bill, primarily—but not exclusively—for terminally ill adults with a limited time to live. Choice is also very important for medical practitioners, and I am very respectful of, and acknowledge the importance of, conscientious objection for doctors. When it comes to assisted dying, I believe that they should also have choice. Indeed, the Bill is written so that they can choose not to participate in the process for any reason. That is the BMA’s view, and I agree with it.

The BMA has a position of neutrality on assisted dying, and there are a range of views within medical professions, as there are within all groups of people. That is why I have adopted its position of an opt-in model for the purposes of the Bill. Nevertheless, the process must remain patient focused at all times, and that means enabling them to have a discussion on such an important matter. It would not be right to rely on online advice or even the best-designed written materials. As we have already established, doctors are used to having sensitive and compassionate discussions with people who are terminally ill, and there can be no substitute for that. While a doctor may not wish to participate themselves, and I fully respect that, they still have a responsibility towards their patients, and that should include ensuring that they can speak to a properly qualified medical practitioner at such a difficult time.

I understand that the BMA and others would not be comfortable with the word “refer”, which I understand to have a special meaning within medical practice. The GMC guidelines use different language. They talk about where a doctor has a conscientious objection, in which case they are advised that they must make sure that arrangements are made for another suitably qualified colleague to take over their role. The BMA’s guidance says that patients must be able to see another doctor, as appropriate, and that it need not always be a formal procedure. It is not, however, sufficient to simply tell the patient to seek a view elsewhere—I agree completely.

The BMA supports amendment 341, which says that a doctor

“must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”

I am therefore happy to support the amendment today and, if it were to need further adjustment, I am very happy to consider alternatives based on existing best practice. I would be very happy to meet with the hon. Member for Sleaford and North Hykeham, who is herself a doctor, to discuss her thoughts and draw on her considerable medical experience.

[Danny Kruger]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 341, in clause 4, page 2, line 33, leave out from “subsection (3)” to the end of line 36 and insert

“is not required to refer the person to another medical practitioner but must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”—(Rebecca Paul.)

This amendment would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion with a person must provide information to the person about where they can have that discussion, but that this need not take the form of a referral.

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[Stephen Kinnock]

As amendments 125 and 126 are consequential on new clause 7, I shall speak to them as a whole and not in turn. The purpose of the amendments appears to be twofold. First, they seek to restrict the role of medical practitioners who can hold an initial discussion to those who have completed training. That training would be specified by the Secretary of State in regulations and would make them eligible to be listed on the register of assisted dying medical practitioners.

Secondly, the amendments seek to apply the same principle to the co-ordinating or independent doctor. In addition, they would place a duty on the Secretary of State to make regulations that would create the register to sit outside or alongside the current system of registration of medical practitioners and set out the training requirements to be eligible to be listed on the register.

Both sets of regulations are to be subject to the affirmative procedure, and the Secretary of State must consult such persons as they consider appropriate before making them. The regulations making provision for the relevant training requirements must be laid within six months of the passing of this Act. The regulations establishing the register must be laid within 12 months of the passing of the Act.

Although the purpose of the amendments is clear, our assessment suggests that the drafting would not achieve the desired effect, because the register would include only those doctors who have not undertaken the specified training or who have opted out of the assisted dying service. Additionally, the suggested timeframe for laying regulations is unworkable, given the need to work with regulators and the proposed duty to consult. There are also significant operability concerns regarding the creation of a new register for a subset of registered medical practitioners.

I hope that the Committee has found those observations helpful. I thank Members for their attention.

[Kim Leadbeater]

I have nothing to add.

[The Chair]

For clarity, amendment 125 is not being pressed to a Division, as I understand it. If the hon. Member for Broxtowe withdraws amendment 125, there will be an opportunity to vote on amendment 126 and new clause 7 later.

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[Stephen Kinnock]

I have made it clear throughout the debate that I am not offering a Government view on the merits of amendments. My remarks are focused much more on the legal and practical impacts of amendments, to assist Members in undertaking line-by-line scrutiny.

The amendments were tabled by the right hon. Member for South West Wiltshire. They would create a further eligibility requirement of the person seeking assistance under the Bill. Amendment 271 and 272 would limit those eligible to seek assistance to end their own life, in circumstances where their terminal diagnosis was received less than six months prior to the date on which the person signs the first declaration, to those who have received a psychosocial intervention. This would be subject to any exceptions provided for by the Secretary of State in regulations. Amendment 271 does not define what is meant by “received a psychosocial intervention” in relation to their diagnosis.

The term “intervention” is usually employed in the health service to mean the provision of support or treatment. This is different from, for example, an assessment that a clinician might undertake to assess whether an intervention may be required. While there is not a standard definition of psychosocial intervention, we understand it to mean psychosocial interventions such as cognitive behavioural therapy. The amendment could create uncertainty as to what type of treatment a person will need to undergo to satisfy the requirement. If a person who would otherwise seek assistance to end their own life under the Bill is unable to, or does not wish to, receive a psychosocial intervention, unless an exemption applies, they may need to delay starting the assisted dying process until at least six months has elapsed from their terminal diagnosis. That could be challenging in circumstances where the terminal diagnosis has a prognosis of six months or less.

The amendment would also introduce a requirement for people in certain contexts to undergo an intervention that could undermine a person’s autonomy in making their own treatment decisions. Were the amendment made, it would confer a regulation-making power on the Secretary of State to create exceptions to the proposed provisions on psychosocial intervention. Regulations made using this power would be subject to the affirmative procedure. It would also give the Secretary of State the power to issue a code of practice in connection with the form of the psychosocial intervention required.

If the Committee decides to accept the amendment, further consideration would be needed on Report to ensure that it is operationally deliverable, and my earlier comments about the definition of psychosocial intervention and other comments would have to be clarified. The Government would, of course, stand ready to assist were the amendment to pass.

As I said earlier, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed—as I have made clear, that is a matter for this Committee and for Parliament as a whole. However, I hope that these observations have been helpful, and thank the Committee for its attention.

[Kim Leadbeater]

I have nothing to add, other than to associate myself with the comments of my hon. Friend the Member for Sunderland Central and those of the Minister.

Question put, That the amendment be made.

Division 29

Question accordingly negatived.

Ayes: 4

Noes: 16

[Kim Leadbeater]

I beg to move amendment 184, in clause 5, page 3, line 7, leave out “Schedule 1” and insert

“regulations made by the Secretary of State”.

This amendment provides that the form of a first declaration is to be set out in regulations (rather than in Schedule 1).

[The Chair]

With this it will be convenient to discuss the following:

Amendment 289, in clause 5, page 3, line 11, leave out “another person” and insert “another registered clinician”.

This amendment ensures that the second witness is a registered clinician.

Amendment 418, in clause 5, page 3, line 12, at end insert—

“(2A) Regulations under subsection (2)(a) must provide that the first declaration contains—

(a) the following information—

(i) the person’s full name and address;

(ii) the person’s NHS number;

(iii) contact details for the person’s GP practice;

(b) the following further declarations by the person—

(i) a declaration that they meet the initial conditions for eligibility (see subsection (2B));

(ii) a declaration that they have had a preliminary discussion with a registered medical practitioner, that they were aged 18 or over when they had that discussion, and that they understand the information referred to in section 4(4)(a) to (c) that was provided during that discussion;

section 4(4)(a)

(iii) a declaration that they are content to be assessed, for the purposes of this Act, by medical practitioners;

(iv) a declaration that they are making the first declaration voluntarily and have not been coerced or pressured by any other person into making it;

(v) a declaration that they understand that they may cancel the first declaration at any time.

(2B) In subsection (2A)(b)(i) ‘the initial conditions for eligibility’ are that the person making the declaration—

(a) is aged 18 or over,

(b) is ordinarily resident in England and Wales and has been so resident for at least 12 months, and

(c) is registered with a general medical practice in England or Wales.”

This amendment makes provision about the content of regulations under subsection (2)(a), which will set out the form of the first declaration.

Amendment 277, in clause 5, page 3, line 12, at end insert—

“(2A) A person may not make a first declaration under subsection (1) until 28 days have elapsed, beginning with the day they received a diagnosis of the terminal illness.”

This amendment would mean a person could not make the first declaration until 28 days from the day they received a diagnosis of the terminal illness.

Amendment 420, in clause 7, page 4, line 16, leave out subsection (3) and insert—

“(3) After carrying out the first assessment, the coordinating doctor must—

(a) make a report about the assessment (which must meet the requirements of regulations under subsection (4));

(b) give a copy of the report to—

(i) the person who was assessed (‘the assessed person’),

(ii) if the coordinating doctor is not a practitioner with the person’s GP practice, a registered medical practitioner with that practice, and

(iii) any other person specified in regulations made by the Secretary of State;

(c) if satisfied as to all of the matters mentioned in subsection (2)(a) to (g), refer the assessed person to another registered medical practitioner who meets the requirements of section 8(6) and is able and willing to carry out the second assessment (‘the independent doctor’).

(4) The Secretary of State must by regulations make provision about the content and form of the report.

(5) The regulations must provide that the report must—

(a) contain a statement indicating whether the coordinating doctor is satisfied as to all of the matters mentioned in subsection (2)(a) to (g);

(b) contain an explanation of why the coordinating doctor is, or (as the case may be) is not, so satisfied;

(c) contain a statement indicating whether the coordinating doctor is satisfied as to the following—

(i) that a record of the preliminary discussion has been included in the person’s medical records;

(ii) that the making of the first declaration has been recorded in the person’s medical records;

(iii) that the first declaration has not been cancelled;

(d) be signed and dated by the coordinating doctor.”

This amendment requires the coordinating doctor to make a report about the first assessment, and (if satisfied of the matters mentioned in subsection (2)) to refer the person to another practitioner for the second assessment.

Amendment 195, in clause 8, page 4, line 40, leave out “statement” and insert “report”.

This amendment is consequential on Amendment 420.

Amendment 209, in clause 16, page 11, line 8, leave out paragraphs (b) and (c) and insert—

“(b) a report about the first assessment of a person is made under section 7;

(c) a report about the second assessment of a person is made under section 8;”.

This amendment is consequential on Amendments 420 and 421.

Amendment 220, in clause 34, page 20, line 36, leave out paragraphs (a) and (b) and insert—

“(a) a report about the first assessment of a person does not contain a statement indicating that the coordinating doctor is satisfied as to all of the matters mentioned in section 7(2)(a) to (g);

(b) a report about the second assessment of a person does not contain a statement indicating that the independent doctor is satisfied as to all of the matters mentioned in section 8(2)(a) to (e);”

Amendment 421, in clause 8, page 5, line 4, leave out subsection (5) and insert—

“(5) After carrying out the second assessment, the independent doctor must—

(a) make a report about the assessment (which must meet the requirements of regulations under subsection (5A)), and

(b) give a copy of the report to—

(i) the person who was assessed,

(ii) the coordinating doctor,

(iii) if neither the independent doctor nor the coordinating doctor is a practitioner with the person’s GP practice, a registered medical practitioner with that practice, and

(iv) any other person specified in regulations made by the Secretary of State.

(5A) The Secretary of State must by regulations make provision about the content and form of the report.

(5B) The regulations must provide that the report must—

(a) contain a statement indicating whether the independent doctor is satisfied as to all of the matters mentioned in subsection (2)(a) to (e);

(b) contain an explanation of why the independent doctor is, or (as the case may be) is not, so satisfied;

(c) contain a statement indicating whether the independent doctor is satisfied as to the following—

(i) that a record of the preliminary discussion has been included in the person’s medical records;

(ii) that the person signed the first declaration;

(iii) that the making of the first declaration has been recorded in the person’s medical records;

(iv) that the first declaration has not been cancelled;

(d) be signed and dated by the independent doctor.”

This amendment provides that the independent doctor must make a report about the second assessment, and makes provision about the report.

Amendment 203, in clause 10, page 6, line 42, at end insert—

“(A1) This section applies where the independent doctor has—

(a) carried out the second assessment, and

(b) made a report stating that they are not satisfied as to all of the matters mentioned in section 8(2)(a) to (e).”

This amendment is consequential on Amendment 421.

Amendment 204, in clause 10, page 6, line 43, leave out from beginning to second “the” in line 44.

This amendment is consequential on Amendment 203.

Amendment 329, in clause 13, page 9, line 20, leave out paragraph (a).

This amendment removes the reference to Schedule 4 from the clause and is linked to Amendment 330.

Amendment 207, in clause 13, page 9, line 20, leave out “Schedule 4” and insert

“regulations made by the Secretary of State”.

This amendment provides that the form of a second declaration is to be set out in regulations (rather than in Schedule 4).

Amendment 330, in clause 13, page 9, line 26, at end insert—

“(3A) A second declaration must include the following information—

(a) the name and address of the person;

(b) the NHS number of the person;

(c) the contact details for the general medical practice at which the person is registered;

(d) a declaration by the person that they have made a first declaration under this Act;

(e) a declaration by the person that the assessing doctors have made the appropriate declarations under this Act together with the dates of those declarations;

(f) the details of the declaration made by the High Court or Court of Appeal;

(g) a declaration by the person they are eligible to end their life under this Act;

(h) a declaration by the person that they wish to be provided with assistance to end their own life under this Act;

(i) a declaration by the person that they understand that they must make this second declaration under the Act and that they do so voluntarily and have not been coerced or pressured by any other person into making it.

(j) a declaration that they understand that they can cancel their declaration at any time.

(k) any other information or signed declarations as may be set out by the Secretary of State in regulations.

(3B) Any regulations made under subsection (3A) are subject to the negative procedure.”

This amendment sets out the requirements for the second declaration by the person and is linked to Amendment 329.

Amendment 331, in clause 13, page 9, line 38, leave out paragraph (a).

This amendment removes the reference to Schedule 5 from the Bill.

Amendment 208, in clause 13, page 9, line 38, leave out “Schedule 5” and insert

“regulations made by the Secretary of State”.

This amendment provides that the form of a statement by the coordinating doctor following the making of the second declaration is to be set out in regulations (rather than in Schedule 5).

Amendment 332, in clause 13, page 9, line 41, at end insert—

“(6A) A statement made under subsection (6) must include the following information—

(a) a declaration by the coordinating doctor that the person is terminally ill within the meaning of this Act and the nature of the relevant illness, disease or medical condition,

(b) details of any relevant declaration made by the High Court or Court of Appeal;

(c) a declaration that the coordinating doctor is of the opinion that the person’s death is either likely or unlikely to occur before the end of the period of one month beginning with the day on which the declaration was made by the High Court or Court of Appeal under this Act;

(d) a declaration that the coordinating doctor is satisfied that the requirements of this Act regarding any period of reflection has been met;

(e) a declaration that the person requesting assistance under the Act has the capacity to do so, and that they have a clear, settled and informed wish to end their own life;

(f) a declaration that neither the first or second declarations by the person have been cancelled;

(g) any other information or signed declarations as may be set out by the Secretary of State in regulations.

(6B) Any regulations made under subsection (3A) are subject to the negative procedure.”

This amendment sets out the requirements for the second statement by the coordinating doctor and is linked to Amendment 331.

Amendment 333, in clause 21, page 14, line 9, leave out paragraph (a).

This amendment leaves out reference to Schedule 6 and is linked to Amendment 330.

Amendment 214, in clause 21, page 14, line 9, leave out “Schedule 6” and insert

“regulations made by the Secretary of State”.

This amendment provides that the form of a final statement is to be set out in regulations (rather than in Schedule 6).

Amendment 334, in clause 21, page 14, line 10, at end insert—

“(3A) The statement mentioned in subsection (2) must include—

(a) the contact details of the coordinating doctor;

(b) the name, NHS number and medical practice of the person given assistance under the Act;

(c) a declaration that the person was provided with assistance to end their own life in accordance with this Act;

(d) the date of any declarations made by the person under this Act;

(e) the date of any statements made by assessing medical practitioners under this Act;

(f) the details of the advanced and progressive condition the person had;

(g) the approved substance provided;

(h) the date and time of death;

(i) the time between use of the approved substance and death;

(j) any other information or signed declarations as may be set out by the Secretary of State in regulations.

(3B) Any regulations made under subsection (3A) are subject to the negative procedure.”

This amendment sets out the information that must be included in a final statement under this Act and is linked to Amendment 333.

Amendment 403, in schedule 1, page 25, line 25, at end insert—

“7. I have—

1. informed my family of my wish to be provided with assistance to end my life and taken their opinions into consideration

2. decided not to inform my family of my decision

3. no family to inform of my decision”.

Amendment 404, in schedule 4, page 29, line 7, at end insert—

“10. I have—

1. informed my family of my wish to be provided with assistance to end my life and taken their opinions into consideration

2. decided not to inform my family of my decision

3. no family to inform of my decision”.

[Kim Leadbeater]

I rise to support my amendments in this group, which seek to clarify the details that must be included, under regulations, in the first declaration, and the report that is consequent on that declaration. While I believe it was useful on Second Reading for MPs to be aware of the content of the form that the doctor should complete, the advice I have received—with which I agree—is that the details are more appropriately a matter for regulations. There is always a balance to be struck, but it would not be reasonable to expect the House to have to consider changes in primary legislation simply to alter the contents of a declaration, important though the details are.

The proposed changes go further in a way that I believe should greatly reassure the Committee. As we discussed this morning, they make it clear that a person must have been over the age of 18 when the first discussion under the Bill took place. They also require doctors not just to make formal declarations, but to produce reports covering the eligibility of the person to request assistance, the nature of the assessments they have made, their discussions with that person and, crucially, the person’s understanding of those discussions and of what the process entails. This will ensure that all the relevant discussions have been recorded and understood, and that an account of them has been recorded and will be available for future reference. For reporting purposes, if a person applying for assistance is found not to be eligible, that information will be recorded too. I hope the Committee will agree that further safeguards will be put in place as a result, without imposing additional stress or burdens on terminally ill patients during such a different period.

[Kit Malthouse]

I rise to speak in support of amendment 184 and to point out that I have now withdrawn amendments 329 to 334, so we will not vote on them later. Like the hon. Member for Spen Valley, I had thought that although it was sensible at Second Reading to have schedules to the Bill that laid out the forms, they were quite limited and strict in their form, so we needed more flexibility and the opportunity for the House, by regulation, to add content to the required forms in the future. I also wanted to insert a declaration by the person that they had had an initial conversation covering all the factors in the Bill and, critically, that they understood the information that had been presented to them. Amendment 184 would do exactly that.

For Members’ reference, I tabled similar amendments that would have done the same with the other schedules. Following conversations with the hon. Member for Spen Valley, I have now withdrawn them all and amalgamated them into amendments that would do the same as those that she has tabled, along with some additional bits and pieces. Amendment 184 is relatively self-explanatory.

I want to speak against amendment 277, which would impose a time limit of 28 days between diagnosis and the first declaration of a terminal illness. In a lot of circumstances, that would be a very difficult time delay for people to face. As the hon. Member for Bradford West, who tabled the amendment, will know, there are already periods of reflection in the Bill, although it also contains provision for a compressed time limit for those who face imminent death. Particularly for those who are unfortunately diagnosed with certain diseases, adding 28 days will insert a delay at a time when people who are facing what they do not want to face—a horrible death—need as much time as they can to get through the process. For example, if we take together all the factors for people who are sadly diagnosed with pancreatic cancer, the median survival is six to 12 months.

I do not know if the hon. Lady knows this, but pancreatic cancer is a particularly unpleasant cancer, not least because it does not exhibit symptoms in its early stages—people do not know they have it until quite late in its development. Treatment for it is not well advanced, and many people diagnosed with pancreatic cancer sometimes have only weeks to live. The idea that we should make them wait 28 days before they can even start the process seems impractical and, I am sorry to say, cruel to them in many ways. It is worth remembering that this is not a six-month “bang, I go and do it.” Most people who have a terminal illness will begin the application process at six months. Once they have the ability to ask for this service, they will then wait until they decide that their life has come to its end, at the time and place of their choosing. That might be at six months, or it might be at six days. The point of the Bill is to put the power to make that decision in their hands. Although the Bill has periods of reflection—it recognises that people need to sit and think about these things—imposing an absolute 28 days on everybody, without accounting for what stage they are at in their disease and how long they have to live, is not necessarily a sensible amendment, and I will oppose it from that point of view.

I understand the objective of my hon. Friend the Member for East Wiltshire in tabling amendments 403 and 404, which are about informing family. I would hope that those are the sorts of discussions that doctors would have—perhaps one of the doctors on the Committee can tell us. On whether we should put that on the face of the Bill, I have been persistent in trying to make sure that the conversation is not guarded. The amendments ask whether I have any family—I am not quite sure what “family” means. Does it mean my children? Maybe I do not want to tell my children. Does it mean my next of kin? I do not know. Is it distant relatives? Is it my whole family? There are problems with the definition of “family”.

While I will not support the amendment, I understand what my hon. Friend was trying to do. I would hope that those are the kinds of sensitive matters that a doctor would tease out of an individual as they look for the various items that we have put in the Bill to make sure that the person is making the decision on a sound basis as a settled view and has the capacity to do so.

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

Kim Leadbeater Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Stephen Kinnock]

The challenge is the dissonance in how the guidance under the Down Syndrome Act, which is currently very close to publication, is directed towards authorities such as trusts, but there is no coverage around individual doctors. At this stage, without seeing a clear distinction between the two or how it would work for individual doctors, the Department’s concern is that it could create confusion as to the obligations on individual medical practitioners under the 2022 Act. I am obviously open to conversations about how to clear that up, but the lacuna between the authorities and the individual doctors is the problem being flagged by the Department.

[Kim Leadbeater (Spen Valley) (Lab)]

I take the Minister’s comments on board. Will he agree to a conversation with me and with the right hon. Member for East Hampshire (Damian Hinds), who tabled amendment 368, to take the discussion forward?

[Stephen Kinnock]

I am happy to have conversations with the hon. Lady and other hon. Members, but as things stand it is not clear to the Department or to me how the proposal would work in practice.

--- Later in debate ---

[The Chair]

That is for the wider debate. I call Kim Leadbeater.

[Kim Leadbeater]

It is a pleasure to serve under your chairship, Mr Efford. The amendments relate to the initial discussions with medical practitioners, and it is important to highlight that clause 4(1) states:

“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person.”

However, subsection (2) states that

“nothing in subsection (1) prevents a registered medical practitioner exercising their professional judgement”.

Doctors and healthcare professionals, like any other group of people, hold a range of views on assisted dying. We need only reflect on the oral and written evidence to see that. However, the British Medical Association has a neutral position on assisted dying, and its representatives were very clear when I met them, and in oral evidence to the Committee, that they wanted an opt-in model for doctors to provide assisted dying, as well as the right to decline to carry out activities directly related to assisted dying, for any reason. These requests have therefore been incorporated into the Bill.

The BMA was clear in its submission that it opposes amendments 8, 124 and 276, as well as amendment 342, which we will come to later. It said that adding a prohibition or limiting factors in the Bill would

“create uncertainty and legal risks for doctors, which may inhibit effective doctor/patient communication and understanding.”

It welcomed the Bill’s provision that a doctor is not under a duty to raise assisted dying, which it felt was necessary to avoid any suggestion that doctors have a legal duty to raise it. It was concerned that these amendments would remove that provision, leaving doctors in a position of legal uncertainty. It said:

“If doctors are concerned that they may be legally obliged to raise assisted dying with all potentially eligible patients, this will impact on how, when, and by whom the issue is raised…It is essential that decisions about when and how to discuss assisted dying are made on the basis of what is best for the patient—rather than to avoid legal challenge. All patients deserve to have this important and sensitive conversation with a doctor who is confident, competent and happy to have the discussion…Doctors should be able to talk to patients about all reasonable and legally available options; a provision that limits or hinders open discussion about any aspect of death and dying is likely to be detrimental to patient care. Doctors should be trusted to use their professional judgement to decide when and if a discussion about assisted dying would be appropriate, taking their cue from the patient as they do on all other issues.”

That is the BMA’s position, and I agree.

As Duncan Burton, the chief nursing officer for England, said in oral evidence to the Committee,

“it is clear that there is increasing discussion in society around death and dying, and I think that is important. It is important that we have discussions and support people with their choices at the end of life, so anything we can do to increase that is important.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 41, Q22.]

Dr Ryan Spielvogel from California told us:

“People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors…even if this Bill becomes law, the general population is still not going to realise that it is an option.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 105, Q143.]

He strongly advised against not allowing doctors to discuss patient choice, because in his experience that really hampers their ability to take care of patients. Dr Jessica Kaan of End of Life Washington reiterated the point:

“It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 106, Q143.]

In the light of our recent discussions, I draw the Committee’s attention to the current BMA guidelines regarding patient requests for assisted dying. Those guidelines will obviously need updating if the law changes, but they are comprehensive and give us a much greater understanding of the approach that doctors take when speaking to terminally ill patients, as well as what these hugely sensitive conversations look like, which is really important to know.

The BMA guidance addresses situations in which patients make an explicit request for doctors’ assistance in or information about ending their life or hastening their death. I will refer to that guidance now. The guidance advises the doctors to

“Explore the patient’s feelings, emotions and thoughts….It might be helpful to discuss their understanding of their condition or their fears and concerns…If you feel that the patient is depressed or suffering from another mental health condition, or would benefit from more support, therapy or counselling should be offered.”

Doctors are also advised to

“Use the opportunity to address those concerns: you should also investigate whether other practical arrangements could help improve the patient’s quality of life. Involve a colleague: you might like to involve a more experienced colleague—making clear to the patient that this is what you will be doing.”

The guidance also talks about involving other sources of support:

“you might like to seek support and input from other members of the healthcare team, such as a specialist palliative care team, colleagues from mental health, or the chaplaincy or voluntary services.”

--- Later in debate ---

[Danny Kruger]

The hon. Lady says that the GMC states that doctors have an obligation to raise the treatment options before them, and I think that she thinks that this is a treatment option. Surely the obligation is on doctors to raise assisted dying in all cases where it may be an option for the patient. Does the hon. Lady agree that doctors should offer assisted dying when that treatment may be appropriate for the patient?

[Kim Leadbeater]

I agree that, under the provisions of the Bill, the doctor will have a duty to lay out options available to the patient, if they meet the eligibility criteria—absolutely. That is the whole purpose of the Bill.

[Danny Kruger]

I am grateful to the hon. Lady for giving me a very clear answer. I just want to be totally clear that we understand each other. Is she saying that every doctor facing a terminally ill patient—someone who is eligible under the Bill—should make clear to them that they have the option of an assisted death?

[Kim Leadbeater]

Well, that is the purpose of clause 4: the doctor has to lay out the options available to the patient as long as all the criteria are met.

We can see from the guidance that currently exists that doctors take a very sensitive and patient-centred approach to end-of-life conversations. If the law were to change, that approach would continue with additional training specifically related to assisted dying, as has been discussed. It would also mean that the issues that doctors currently face around discussing assisted dying would be addressed.

As the BMA says, at the moment

“The law does not provide a clear definition of which actions might constitute assisting or encouraging suicide…What if a patient wishes to travel abroad for assisted dying? While the act of travelling abroad for assisted dying is not illegal, assisting, facilitating, or encouraging someone to do so is a criminal offence…doctors need to be aware of the possibility of legal and professional sanctions if they were to do so.”

I imagine that that must create a real sense of jeopardy for doctors. Similarly, the GMC recognises that doctors will face challenges in

“ensuring that patients do not feel abandoned”,

while ensuring that the advice or information that they provide does not encourage or assist a person to end their own life.

These are very difficult conversations for patients and doctors, but by legalising assisted dying in this country we can give clear guidance through a robust legal framework, and create the thorough, transparent process that is currently lacking. These conversations provide a safeguard while the person is still alive. As the former director of public prosecutions, Sir Max Hill, told the Committee,

“In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 86, Q111.]

Mark Swindells from the General Medical Council told us:

“We do get inquiries from doctors who are concerned that they are doing the right thing when it might become apparent to them that a patient wants to travel overseas to access assisted dying.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q36.]

Bringing those conversations out into the open has to be better for the patient and the practitioner.

[Lewis Atkinson (Sunderland Central) (Lab)]

With reference to amendment 8, and further to the intervention from the hon. Member for East Wiltshire, can my hon. Friend reflect on the provisions as set out in clause 4(1) and (2), which say that the issue relates to doctors’ professional judgment and that doctors are under no obligation to raise those issues in any situation?

[Kim Leadbeater]

Absolutely. This is about professional judgment, which is what the BMA is really clear about. Doctors have to be able to use their professional judgment. They are not under any obligation to raise the issue, but they are not under any obligation not to raise it. The BMA is really clear about that. I thank my hon. Friend for his intervention.

I welcome amendments 319 and 320 from my hon. Friend the Member for Bexleyheath and Crayford and I thank him once again for his positive engagement with the Bill. He raises a very valid point about the initial discussion. While the Bill is very clear that it applies only to terminally ill adults over the age of 18, in that someone would have to be over 18 to make the first declaration, it is not clear that the initial discussion could also not happen with someone under the age of 18.

We should not prohibit open conversations with terminally ill young people and their families, as they create openness, transparency and safeguards and provide much-needed support at what most of us can only imagine must be the most difficult time of anyone’s life. However, I think it should be made clear that the actual assisted dying process cannot be embarked upon unless someone is over the age of 18. I have taken advice about how best to incorporate that into the Bill from a drafting perspective. As a result, I have tabled amendment 418, which applies to clause 5, and states that regulations must provide that the first declaration contain, among other things,

“a declaration that they have had a preliminary discussion with a registered medical practitioner, that they were aged 18 or over when they had that discussion, and that they understand the information referred to in section 4(4)(a) to (c) that was provided during that discussion”.

As such, the aim of amendments 319 and 320 is achieved. I hope that that is to the satisfaction of my hon. Friend the Member for Bexleyheath and Crayford.

With regard to amendment 339, I have listened very carefully to the concerns of my hon. Friend the Member for Bexleyheath and Crayford, who tabled it, and the evidence from Mencap chief executive Dan Scorer, who suggested that for terminally ill people with learning disabilities

“that initial conversation has to be incredibly well supported and structured…the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280.]

I absolutely agree with the intention of the amendment. I am seeking advice on the legal and technical implications, as I believe there is some tightening up that would need to be done around some of the phrasing, such as the concept of “sufficient time” or what would constitute a “supporter”. I therefore cannot support the amendment as it stands, but I am very happy to look at ways to take this forward and to meet my hon. Friend to discuss the amendment, which, quite rightly, gives special consideration to people with autism and learning disabilities. I know that my hon. Friend the Member for Penistone and Stocksbridge is also considering tabling amendments that would have a similar effect; perhaps we could all meet together.

I also reassure my hon. Friend the Member for Bexleyheath and Crayford that I am considering the involvement of people with learning disabilities, and groups representing them, in the development of guidance and training on assisted dying and end-of-life conversations. As Dan Scorer said,

“people with a learning disability should be involved in the development of that guidance” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281.]

I absolutely agree.

Amendment 368, tabled by the right hon. Member for East Hampshire, has been discussed this morning. I sought advice about it as it was new to me. I believe that no statutory guidance has yet been published under the Down Syndrome Act, so we lack detail. That Act resulted from another private Member’s Bill; I am sure we can all agree what an excellent process this is for making important changes to the law. As the Minister said, the amendment is likely to be unworkable for doctors so I cannot support it. I would, however, be very happy to discuss the thoughts of the right hon. Member for East Hampshire and look at how we can meet his objectives—possibly through an addition to new clause 8, which is about the duty to consult and the Secretary of State consulting with the Equality and Human Rights Commission. At that point, the specific needs of not just people with disabilities but those with other protected characteristics will be represented. Alternatively, we could look at the codes of practice in clause 30.

I am happy to take those discussions forward and may even be able to speak to the right hon. Member for East Hampshire at the drop-in session he is doing this week with the National Down Syndrome Policy Group, ahead of Down’s Syndrome Awareness Week.

[Kit Malthouse]

As the hon. Lady will know, a number of our proceedings have been misinterpreted, shall we say, on social media. For complete clarity, with regard to the initial conversation, the Bill leaves to the discretion of the doctor whether it is appropriate to raise the matter, given their knowledge of the patient. They have no obligation to raise it. If the patient themselves indicates a wish to raise the matter, then a doctor is under an obligation to lay out all the options available to that patient. We would not want to leave the outside world with the impression that, in all circumstances, the doctor is obliged to raise the option of assisted dying. It is only when they professionally think it is appropriate or if the patient raises it with them.

[Kim Leadbeater]

The right hon. Gentleman is absolutely right. As I have said, the BMA has been very clear that doctors should use their professional judgment. For example, if they had a patient whom they knew to be deeply religious and who had no interest whatsoever in an assisted death, it is highly unlikely that they would raise the possibility. It is up to them to use their professional judgment to accommodate the wishes of the patient. It has to be a patient-centred approach.

[Danny Kruger]

Will the hon. Lady give way?

[Kim Leadbeater]

I am done.

[Sarah Green (Chesham and Amersham) (LD)]

We have had a good debate on the amendments in this group. I do not intend to push amendment 278 to a vote, and I have nothing further to add to my previous remarks. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 8, in clause 4, page 2, line 16, leave out from “practitioner” to end of line 20 and insert

“shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life”.—(Daniel Francis.)

Question put, That the amendment be made.

--- Later in debate ---

[Kim Leadbeater]

I just want to let the hon. Gentleman and the Committee know that I met my hon. Friend the Member for East Thanet last night, and I am delighted to support her amendment 108.

[Danny Kruger]

I am very pleased to hear that. That is very encouraging news, because I have been concerned that the hon. Lady was resting her case on amendments to clause 12, which would not require a palliative care specialist. I am grateful to her for intervening to inform us of that.

Nevertheless, we need to go further. The amendments in the name of the hon. Member for York Central (Rachael Maskell) would require that a specialist, rather than just a GP, leads the initial assessment. The fact is that despite their enormous range of expertise, general practitioners are not qualified or confident in making prognoses of terminal illness. The written evidence from the Association for Palliative Medicine of Great Britain and Ireland cited a 2021 paper showing that over half of GPs were not consistent in how they applied their predictions to different patients. It is important that specialists in the relevant conditions should be involved in these assessments so that patients receive expert input with a lower risk of error.

It is significant that, during the Second Reading debate on 29 November, the House was unanimous in its appreciation of, and praise for, palliative care specialists. It seems strange that their expertise should not be considered essential to a terminally ill person’s consideration for an assisted death. When we look at other countries, we see that it is not an exceptional safeguard. South Australia’s Voluntary Assisted Dying Act 2021 specifies:

“Either the coordinating medical practitioner or each consulting medical practitioner must have relevant expertise and experience in the disease, illness or medical condition”—

we are not using that any more—

“expected to cause the death of the person being assessed.”

I urge the Committee to reflect on the South Australia model, which is good in this regard.

I turn to amendment 53, in the name of my hon. Friend the Member for Runnymede and Weybridge, and amendment 275, in the name of the hon. Member for Sunderland Central. The Bill currently requires doctors to discuss “available” palliative care options, but that may limit what patients are told. Amendment 275 would provide that patients should be informed of “all appropriate” palliative care alternatives, even if they are not readily available in their local area. We do not want patients choosing assisted dying simply because of unequal geographic provision of palliative care making them unaware of alternatives that could improve their quality of life.

I would go even further in support of amendment 53, which hits the nail on the head. Fundamentally, we have always said that assisted dying should be available only to people who palliative care cannot help. That is what amendment 53 entails: it states that assisted dying should be available only for people for whom the relevant palliative care is actually an option and, if they decline it, that would be their choice.

Finally, I will speak to amendments 425 and 426 in my name, which express the need for a proper multidisciplinary team at the right stage of the assisted dying process. The hon. Member for Spen Valley has emphasised the importance of multidisciplinary teams, and I welcome everything she said. It is very good to get her agreement, through the amendments that she has tabled, that two doctors working alone are not enough to protect and support every patient. I welcome that recognition.

Amendments to clause 12 attempt to fill this gap by introducing the expertise of a psychiatrist and a social worker, but they do not fulfil the role of a multidisciplinary panel. Rachel Clarke, one of the witnesses who told us to consider multidisciplinary assessments, has written subsequent to the amendments being tabled: “A ‘judge plus’ panel”—there will not actually be a judge, so perhaps we should call it a “lawyer plus” panel—

“is not an MDT…the panel’s scrutiny comes only at the end of the process, not at the beginning, when a patient first asks for the intervention of assisted dying. Yet this is a moment of peak vulnerability.”

We will get on to the question of whether a judicial panel should replace a High Court judge, but I emphasise very strongly that the introduction of this process is not the equivalent of having a proper multidisciplinary team considering the application for an assisted death at the appropriate moment.

As the Association for Palliative Medicine said last week, the Bill

“does not align with the standard multi-professional team…decision-making process used across the health service.”

It said that the panel is too distant from the patient and comes too late in the process. It said that the Bill would be stronger if the initial assessments were

“carried within a multi-professional team model”.

It is at the stage we are debating here—in the initial assessments—that the MDT needs to apply. For the record, if it has not been properly noted before, I also state that when the hon. Member for Spen Valley quoted Dr Sarah Cox on the importance of multidisciplinary teams, Dr Cox was not endorsing clause 12, but explicitly arguing for earlier introduction of the multidisciplinary process.

--- Later in debate ---

[Kim Leadbeater]

To be clear on the multidisciplinary approach, the point that I was making in that contribution was that that happens already. We are misrepresenting what goes on in current practice with terminally ill patients if we say that there is not a multidisciplinary approach, as indeed various witnesses told us. It is important to acknowledge that.

[Danny Kruger]

The hon. Lady is absolutely right that that is what witnesses told us, but we need to ensure that it happens in all cases; the purpose of these amendments is to ensure that good practice is universal. In the case of assisted dying, bad practice would be terrible. Of course, good doctors seek the guidance of others and do not operate in isolation, but the Bill would allow them to do so. It is important to ensure that the system lives up to the good practice that she refers to.

Committee members will be glad to hear that I am not going to rehearse the arguments about capacity and coercion, but those concerns are why it is important to have a multidisciplinary team at an early stage. The Committee has rejected all attempts to strengthen the capacity test, but it could at least allow a psychiatrist to have an earlier role in the process of checking for capacity. We heard from multiple witnesses about the importance of doing that, and that is what National Institute for Health and Care Excellence guidance states. As the hon. Lady said, it is good practice, so as Professor House said in his evidence to us, it would not be “a terribly radical thing” to do it.

On coercion, as the social worker Jess Carrington wrote to us:

“The only people who are comprehensively trained to recognise signs of abuse, in particular, coercive control, are social workers.”

According to research by Dr David Ross, doctors suspect less than 5% of cases of elder abuse. I will not rehearse the arguments around coercion, but I hope that the Committee will note that the only way—or the best way; it will not be foolproof—to ensure that coercion is spotted is by having a social worker at the very beginning of the process.

I think that is enough from me, Mr Efford—I am sure you agree.

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[Sojan Joseph (Ashford) (Lab)]

I rise in support of the amendments, especially amendments 342 and 425. We have discussed various aspects of the Bill, especially capacity, coercion and medical practices, under many previous amendments. As somebody who worked as a mental health nurse for many years, and who worked as part of a multidisciplinary team, I think that amendments 342 and 425 are some of the most important.

Amendment 342 talks about the preliminary conversation with the medical practitioner with whom the patient makes contact. Do we not think that the doctor who knows most about that patient is the best person to have that preliminary discussion? They will have the most information about them. When the patient, who has gone through so much difficulty, goes to their doctor or to a GP who knows them well and says, “I would like to choose the assisted dying pathway,” would that doctor then say, “I do not want to discuss this. Somebody else will.”?

[Kim Leadbeater]

Is my hon. Friend not concerned about the concept of conscientious objection? The BMA strongly opposes amendment 342, because it does not think doctors should be obligated to have that initial conversation if they do not want to.

[Sojan Joseph]

There are other people who support this concept, and they are the people who will be having the conversation—we have both sides of the argument. I believe that the best person to have that preliminary discussion would be the doctor who knows about that patient the most—about their circumstances, prognosis, family situation and pain. We talk about compassionate care, but where is the compassion in here? I am not saying that another doctor would deny that—but I am talking about compassion. Someone going through the most difficult time in their life would have the confidence to talk to the person who knows the most about them, which is why I fully support that the initial discussion should happen with them. I am not saying that they should say yes or no, but they should be talking about the care provisions and options available to the patient. Amendment 342 is one of the most important amendments we will debate.

I will move on to amendment 425. When I tabled amendment 1, my thinking was that a psychiatrist should be involved in these discussions, but I think amendment 425 will safeguard most of the concerns we have discussed in previous sittings. Amendment 425 talks about a “multidisciplinary team” and having a psychiatrist involved as well. Written evidence was sent to us on 29 January by the Royal College of General Practitioners, which recommended that a separate pathway that

“covered every stage of the process would ensure healthcare professionals of multiple disciplines…who wanted to do so could still opt in to provide assisted dying, but this would be arranged through a different pathway.”

The hon. Member for Sunderland Central spoke earlier about how patients may be going through many multidisciplinary teams already, but it could be that none of those multidisciplinary teams have talked with them about assisted dying. They could have been pharmacists or nurses talking about the patient’s care—not assisted dying. We are talking about setting up a multidisciplinary team with a mental health nurse, doctor and social worker who can look in detail at evidence of the patient’s capacity, whether they are choosing it because they feel they are a burden, and whether there is any coercion. I think that is a safeguard for most of the concerns we have discussed in previous sessions. I would love to see a psychiatrist involved, because psychiatrists deal with some of the most challenging patients, including those with suicidal thoughts, on a day-to-day basis. They are the most experienced people to carry out a capacity assessment and, if they are a part of the multidisciplinary team, it will safeguard the Bill.

I strongly support amendment 425 and I urge Members to consider it. It will reassure many people who are concerned about some of the discussions. I know it also talks about giving power to the Secretary of State to formalise who should be part of the multidisciplinary team, which would be a discussion for later. I thank the Committee for giving me the opportunity to speak in support of the amendment.

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

Kim Leadbeater Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Sojan Joseph]

I agree. As part of the code of practice, professionals are expected to complete the training that has been outlined already, but I am not confident that that is actually happening. Saying that there will be training does not reassure me that it will be robust enough.

[Kim Leadbeater (Spen Valley) (Lab)]

The hon. Member for East Wiltshire seemed reassured by the fact that there will be training in the Bill—it is on the face of the Bill and will therefore definitely take place—

[The Chair]

Order. Can Members address the Chair, not turn to face other Members?

[Kim Leadbeater]

I am pretty confident that an amendment is going to be tabled, if it has not been already, that would change that “may” to “must” in the clause on codes of practice.

[Sojan Joseph]

I would be happy to see the Bill make a strong case that the people who will take part in this process have training before they do so.

My larger issue is around the independent doctors. Again, I will use some examples of how the Mental Health Act 1983 has been carried out in its current format. Those cases always use a section 12-approved doctor, who is a second doctor and they may not have had any kind of contact with the patients. We may or may not end up in that sort of similar situation. That is the point I was making earlier.

As the Royal College of Psychiatrists mentioned, capacity can change and decisions are opinions with margins of error. I mentioned my experience working in mental health wards earlier, and the hon. Member for East Wiltshire talked about the capacity assessments carried out when patients are standing by or threatening to jump off a bridge. I am not comparing these situations or saying that they are similar, but we have to make decisions based on capacity. In my experience of discharging people from hospital in a mental health unit, when somebody is threatening, “I’m going to kill myself if you discharge me”, the multi-disciplinary team—the doctors and the nurses—have to make a decision on whether to discharge the patient based on their capacity at that time.

Capacity is assessed based on whether someone is able to understand information—can they retain, use and weigh information, and can they communicate their decision? We cannot compare that with the situation of somebody asking for assisted dying. I want to make it clear that the capacity assessment is the key. I would love to support this amendment. As I said earlier, this issue was one reason I voted against the Bill on Second Reading, but passing this amendment might change my position and I would love to support it.

[Jack Abbott (Ipswich) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Mrs Harris. I will speak specifically to amendment 50. I fully appreciate and accept the points made on a number of occasions during this debate by my hon. Friend the Member for Stroud—that many proposed changes either already feature in the Bill or are the current course of practice for doctors and other medical professionals. As I have said previously, I am not generally in the business of supporting amendments that, in my view, overcomplicate issues, are ambiguous and could lead to other consequences or are simply repetitious, but I do not think that amendment 50 would do those things.

Some proposed amendments are featured in the Bill, either directly or implicitly, but I do not see how amendment 50 would overcomplicate or lead to ambiguity. It is a quite direct and, dare I say, common-sense ask that we should all support. I take the point made by the right hon. Member for North West Hampshire on proposed new subsection (2)(f) of clause 3, as inserted by amendment 50, though I confess I did not read it in the same way that he did. I read it as saying that anyone looking to go down this route should be made aware of the legal consequences. That is a sensible suggestion.

I do not expect a doctor would be going into people’s bank accounts or deeply understanding their legal affairs, but due consideration, advice and information should be imparted to the person who is applying. That is how I read it; I did not think it would be a hugely intrusive, in-depth study into a person’s personal finances.

[Kim Leadbeater]

Does my hon. Friend acknowledge that it could be a problem and an area of concern if we have two Members who have both read an amendment but have different interpretations of it?

[Jack Abbott]

Potentially. There are certain words and clauses on which everyone will come to very different conclusions. This has been the case throughout the entire Committee process, which is approaching its 16th sitting now. It has already been said that this provision could be tightened up, and I welcome the Ministers’ input in helping us to understand their position on aspects like this.

In my view, there is nothing in amendment 50 that specifically says, “This would be an intrusive look at someone’s personal finances.” The measure—on the advice that would have to be given—is a proportionate one. Yes, it could be reasonably argued that proposed new subsection (2)(c) to clause 3, as set out in amendment 50, has already been covered under things that we have discussed extensively, such as coercive control and pressure. Equally, I do not think that any of the language in the amendment would necessarily overrule any other issues or make them more ambiguous. From that point of view, I will be supporting the amendment. I do not think there is anything in it that would override or lead to complications with any other part of the Bill, but it does put in black and white on the face of the Bill some of the very basic processes that should be happening.

I appreciate that many of the points in amendment 50 are already happening or feature directly or implicitly in the Bill. However, I do not think there is any harm in the amendment; in fact, given the nature of what we are talking about and the fact that this legislation is unprecedented in this country, we should be very clear and direct. I do not think it will lead to confusion for our medical profession. These are straightforward and common-sense asks. On that basis, I will be supporting this amendment.

--- Later in debate ---

[Stephen Kinnock]

The Bill has a two-year commencement date. Within that two-year period, the Secretary of State will make regulations to determine precisely the kind of training and capacity building that are required, and that training will be delivered within that two-year period. Those sorts of issues will be dealt with if the Bill gains Royal Assent.

Clause 3 sets out that any assessment as to whether a person has the capacity to make a decision to end their own life is to be determined in accordance with the Mental Capacity Act 2005, sections 1 to 3 of which establish the principles and criteria for assessing a person’s capacity to make decisions. Section 2 of that Act establishes that a person lacks capacity if they are unable to make the decision in question, owing to an impairment or disturbance in the functioning of the mind or brain. Section 3 states that a person is unable to make a decision if they are unable to

“understand the information relevant to the decision…retain that information…use or weigh that information”

as part of the decision-making process, or communicate their decision.

As the Committee will be aware, the Mental Capacity Act has for some time provided a robust framework for important and difficult decisions, and it is familiar to clinicians. I hope that my remarks have been helpful to the Committee in considering the Bill and the amendments.

[Kim Leadbeater]

It is a pleasure to see you in the Chair, Mrs Harris. I welcome another good debate on capacity, following our thorough deliberations a couple of weeks ago. In that debate, I made my views on the Mental Capacity Act quite clear. Although I have listened intently to colleagues’ contributions today, it remains my view that this well-established piece of legislation is the right vehicle for assessing capacity for the purposes of the Bill. I therefore commend the clause to the Committee.

[Daniel Francis]

I will not speak for long. I spoke in great depth about my amendment and other amendments this morning.

Over the past few weeks, hon. Members will have heard, long and hard, about where I come from on the clause stand part issue. This has been one of my greatest difficulties. It drove me to oppose the Bill on Second Reading, and I continue to have grave concerns that the Mental Capacity Act 2005 was not written for this scenario. I draw Members’ attention to my exchange with my hon. Friend the Member for Stroud this morning when, on decision making in the Mental Capacity Act, it was accepted that it has to be presumed that somebody has capacity, and in those scenarios a doctor must assist in the decision-making part of the process.

My great concern—I am sure we will continue this debate when we come to clause 4—has been around people with learning disabilities, and that is where I have ended up in this place. I have said this before and I am sure I will say it again in my contributions: people may think that I have a vested interest, but actually my daughter will never have the capacity to make these kinds of decisions. I am here in this Committee because hundreds of thousands of people in this country are involved in family decisions where a child or a loved one does have enough capacity. The Mental Capacity Act was rightly written to allow them to live independently, buy a coffee and do their banking, but I do not believe it was written for this scenario, so I will support the amendments.

I presume that the amendments may well be rejected. I look forward to discussing, in due course, the amendments tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), because they bring us into a scenario that does exist in the medical field, in respect of discussions with the doctor. As things stand, I will support the amendments. Unfortunately, I will oppose clause stand part simply because I continue to believe, as I did on Second Reading, that the Mental Capacity Act 2005 was not written for this scenario.

Question put, That the amendment be made.

--- Later in debate ---

[Kit Malthouse]

I rise to speak briefly to amendment 368, which stands in the name of my right hon. Friend and constituency neighbour the Member for East Hampshire (Damian Hinds). I thought it was an interesting amendment to table, not least because I witnessed the introduction of the Down Syndrome Act 2022 by our colleague—sadly, now former colleague—Dr Liam Fox. He was a casualty of the last general election and is a great loss to the Chamber. His successor should certainly feel guilty about what he achieved, in my view; I am not sure that everybody would share that view, but there we are.

The Down Syndrome Act was an important private Member’s Bill that sought to recognise the status of people with Down’s syndrome in society and to sensitise institutions to their welfare and wellbeing. Essentially, it provides that guidance should be issued by the Government to various institutions across the health service and civil society generally, that would be used to accommodate the needs of and be sensitive to dealing with people with Down’s syndrome, particularly as they reach adulthood.

Although I am sympathetic to the amendment’s aims, there are a number of issues with it. I think its objectives could be, and frankly should be, addressed in other ways. Essentially, my reading of the Down Syndrome Act is that it is aimed at institutions such as health trusts and local authorities, not at individual practitioners. Unfortunately, under that Act, which asked the Government to issue guidance on Down’s syndrome, no guidance has been issued. We have a rather good legislation website in this House that tells us whether a Bill has had an impact or had any effect. If we look up the Act on it, the website tells us that there has been no effect yet. Certainly no guidance has been issued.

I am concerned about the interplay between the Down Syndrome Act and this Bill. However, there are opportunities where we can recognise the particular needs of those with Down’s syndrome, who will often be life-limited because of their condition. That needs to be taken into account. Amendment 394, which refers to advocates, will be important from that point of view, and new clause 8, which will hopefully be agreed to—I will certainly be supporting it—includes a duty to consult in regulation. I invite the Minister to make a commitment in his winding-up speech that groups representing those with Down’s syndrome would be part of the consultation package. I am sure that that is perfectly doable.

Clause 30, which deals with codes of practice that the Government will issue, and clause 31, which mandates the chief medical officer to produce guidance for medics and some of the training that will be required, should include modules on dealing with individuals with Down’s syndrome. I do not know whether anyone is intending to press amendment 368, and I do think that there are problems with it, but my undertaking is to go away and talk to my right hon. Friend the Member for East Hampshire about what could be done, perhaps at a later stage.

[Kim Leadbeater]

I will speak to the amendment shortly, but will the right hon. Gentleman take a commitment from me that I will happily join him in those conversations if it is at all helpful?

[Kit Malthouse]

I am very grateful to the hon. Lady. It would be fantastic if she did that. However, I think we could probably deal with the intent of the amendment if the Minister were willing to commit—it is not a big commitment to make—that in the making of regulations and in the instructions to the CMO to produce guidance, he will stress the importance of consulting those with Down’s syndrome and dealing with the issues that they face, notwithstanding the impact of new clause 8 and amendment 394, and recognising that there is no guidance yet under the Down Syndrome Act. That might be a more belt-and-braces approach to what the amendment is trying to achieve than hoping that that Act and this Bill will interact in a beneficial way.

--- Later in debate ---

[Kim Leadbeater]

The hon. Member is making an important point. As someone with friends who have children with Down’s who, as he says, absolutely have very fulfilling lives, I hear every word that he is saying. Will he take a commitment from me back to those organisations? I commit personally to meeting them, perhaps alongside the right hon. Members for East Hampshire and for North West Hampshire, at a time convenient to them.

[Danny Kruger]

I am grateful to the hon. Lady and am sure that that will be welcomed. It does rather go back to the point that the organisations made at the outset, which is that they wish they had had more consultation earlier on, but I understand why that was not possible in all cases.

--- Later in debate ---

[Danny Kruger]

I hope that the hon. Member is not suggesting that all 600 would be averted by the Bill. He might be right that some would be, and I recognise that. However, the purpose of amendment 270 is to ensure that people who might be suicidal receive an assessment, whether they are inclined to apply for assisted death, if it is legal, or to take their own life in an unassisted way. If they expressed a wish under the clauses of the Bill to have an assisted death, they would have proper psychosocial assessment and proper steps would be taken to ask, if we are prepared to make this distinction, “Is it just that they are suicidal and not wanting an assisted death?” I find the distinction difficult to parse logically, but if that is the distinction that we are making, let us put it into the Bill and ensure that people are properly cared for in that very dangerous time after they get a terrible diagnosis.

I would like to quote from the written evidence that we received from a member of the Pathfinders Neuromuscular Alliance, which is a user-led charity for those with muscle-weakening conditions such as muscular dystrophy. This person said:

“I’ve been there, I’ve wanted to die, and I’ve been in the position where I would take that option if it was given to me”—

not if it was not. Interestingly, he would have taken that option if it was given to him, rather than suggesting that he was going to take his own life anyway. The quote continues,

“but looking back I can see I was depressed and now I’m so glad that I didn’t take that option.”

At the moment, the Bill does not require anyone to explore these psychosocial factors, and although the person can be referred to a psychiatrist—and, if we go on to accept the amendment, we would ensure that they must be if the doctor concludes that there is doubt—I do want to make a point about referrals. There is an assumption that the doctor will refer the person to a psychiatrist, but that will only happen if they have done their assessment well. We are assuming that they will do the assessment well, but we have heard repeatedly that such assessments are often not done well. I welcome the coming amendment—amendment 6—that says that if the doctor concludes that there is doubt about capacity, they “must” refer. That would be a step forward, but it is not sufficient. Even the psychiatrist will only answer the question, “Is this person able to make a decision?” That does not address any of these other factors.

In Oregon—we refer often to Oregon, and although this Bill is supposed to be the safest in the world, it is not as safe as Oregon in this respect—the doctors may refer the patient for counselling if the patient

“may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment”.

To conclude on this point, psychosocial care is fundamental to good end-of-life care. Members of the Committee have said that palliative care and assisted dying can complement each other; this assessment should be part of that picture, and it needs to come before the first declaration, because once somebody has signed that declaration they are already on the pathway—and there will not be an obligation on them to receive palliative care advice either, because we rejected that amendment. Amendment 270 provides for people’s needs to be met at the first opportunity.

Lastly, on the question of doctor-initiated conversations, I quote Professor Brassington, who submitted evidence to the Committee:

“In normal medical practice, the patient approaches the medic with a problem, and the medic suggests possible courses of action, not all of which would have been considered by the patient. The patient permits further action. But it is implicit that the practitioner who makes the suggestions thinks them good, and the patient is entitled to think that the practitioner endorses them all.”

In a normal scenario, the doctor would think about what is good for the patient. To raise an option is to endorse and encourage it, perhaps as one among a number of other options. It is to suggest that this is a good option—it might not be the one the doctor thinks is the best, but it is a good option for the patient; otherwise, they would not raise it. They can only make a recommendation for options that they consider would be appropriate to the situation.

[Kim Leadbeater]

On that point, I fundamentally disagree, although I will stand corrected by medical colleagues. I do not think that the doctor in this instance is making any suggestion; what they have the responsibility to do is to lay out the options, but it is up to the patient to choose. I would imagine—again, I will stand corrected by medical colleagues—that that is standard practice.

[Danny Kruger]

This is an important debate to have, because the clear implication of a doctor making a recommendation is that this option would be good for the patient. It is one of many—

[Kim Leadbeater]

It is not a recommendation.

[Danny Kruger]

Indeed, it is not a recommendation; but in laying out this option for the patient, the doctor is clearly communicating that it might be the right thing for the patient to do and that it might address their needs. If the suggestion is that they are making a suggestion that might not be good for the patient, then that is of serious concern to us, is it not? The clear implication of current law—with reference specifically to Montgomery v. Lanarkshire Health Board, which determines that we have patient-led medicine in this country now—is that a doctor is obliged to set out all the options that he or she thinks might be appropriate to the case. That goes back to the question about whether we regard assisted dying as a healthcare intervention, but if we do regard it as one, then if it is suggested, it is because it might be the right thing for the patient to do. Implicitly, there is a suggestion that it could be the right option for the patient.

It is interesting that clause 4(1) disapplies Montgomery and says that a doctor is not obliged to make this suggestion. That poses the question: is it therefore a treatment at all?

--- Later in debate ---

[Danny Kruger]

That is absolutely right. Either this is a medical treatment—in which it should be obligatory for a doctor presented with a patient who qualifies under the Bill and has the symptoms that we are talking about to say, “By the way, there is also this option”, which is what I think my right hon. Friend the Member for North West Hampshire is suggesting—or it is not a healthcare treatment at all. Clause 4(1) states that they do not have to raise the subject, in which case they should not raise it, because to raise it is to put it on a par with other healthcare options and therefore implicitly, or indeed pretty explicitly, to say, “This is an option that might be good for you”, which is an enormous communication to make.

I go back once again to the difference between this and withdrawing treatment. I have to say this so many times because it is so important: this is not equivalent to withdrawing treatment because this is not specific to the illness being treated. A person can have a treatment or not, and that will address the condition that they are suffering from. The termination of life does not address someone’s symptoms, treatment, condition or illness; it kills them. It is a different order of intervention. I do not think it is a healthcare treatment at all, and it should not be treated as such.

[Kim Leadbeater]

The hon. Member makes a valid point about the circumstances in which this option would be considered a valid choice for a patient. That brings us back to the fact that we are talking about someone who is going to die; the question is how they are going to die. It is not someone who is going to get better—they are not going to wake up and find that everything is going to be fine. This is about what that death looks like.

Pat Malone—one of our witnesses in oral evidence—had a brother who had seen his father die under circumstances so horrible that he had begged his children to help him die. Then the brother got the same condition and could see what his death could look like. Does the hon. Member not value the choice that assisted dying would give that patient to take back control of what their death could look like, with their loved ones around them? This is a very real situation for, sadly, lots of people, and could be where that choice could be valid.

[Danny Kruger]

I was not asking for cases in which it might be the right choice for somebody—I recognise the argument there. I am asking when it might be appropriate for a doctor to suggest it. In the case of the Malone family, if this law had been enforced, they would have requested it themselves. Again, I want to know under what circumstances it would be best for the patient—in their interests—for an assisted death to be suggested to them by a doctor, when they had not raised it themselves. Under what circumstances might that happen?

[Kim Leadbeater]

The concept of a suggestion is also not particularly accurate—it is a choice, in the same way that the other options are a choice. Families could only ask for this conversation if they knew about it, and while we are all living and breathing this Bill at the moment, even if it does come to fruition and the law is changed, there will be people who do not know about this option. Surely, it would not be informed consent for a person to suffer a horrible death if they were not told about this option.

[Danny Kruger]

On the suggestion that people will not know that this option is on the table, who are we talking about in those circumstances? I suggest we would be talking about people who are extremely marginalised, and I would be very concerned about a doctor suggesting an option to them. There may be a tiny number of people who would not know that this option is legal, but I am afraid it would be very widely known the minute that it is law.

[Kim Leadbeater]

rose—

[Danny Kruger]

I will certainly give way in a moment. An enormous number of people will be dragged into the scope of the Bill by suggestions being made to the vulnerable people that we are concerned about. I really do invite her to answer this as honestly as she can; does she not accept that being given this option by a doctor—given the doctor’s position of power and the vulnerable position that the patient is in—could well be interpreted as a suggestion that this might be a good thing for them to do? Does she does not recognise that?

--- Later in debate ---

If the Bill becomes law, it will mark a departure from previous practice in revolutionary ways, so we have to consider the possibility that it should also depart from the previous practice, in which doctors should be able to discuss all pathways with their patients. I think it should, and the key factor for me is the testimony given to the Committee by palliative medicine specialists: doctors like Jamilla Hussain and Rachel Clarke.

[Kim Leadbeater]

In the interests of balance, would my hon. Friend also acknowledge the testimonies we heard from Dr Jane Neerkin, Dr Sam Ahmedzai and other palliative care specialists who had a very different view?

[Naz Shah]

I do acknowledge that, but ultimately I am a Member of Parliament for my constituency of Bradford West, and we have a doctor who has been doing research with its communities. I come from a community where there is huge deprivation: Bradford West has two of the most deprived wards, and one of the youngest populations. During covid, people there were DNR-ed—so they do not have that confidence.

I accept that others may have different opinions, but I come back to the point that I made earlier: which case is more convincing? Do we raise the safeguards? Dr Jamilla supports assisted dying but she made it clear that, although she supports it for some people, who may well benefit from assisted death, the truth is that there are people who the Bill fails to protect. That is what I am speaking to, and that is what amendment 8, tabled by my hon. Friend the Member for Blackpool South, speaks to.

The Committee is talking about people who are facing the ends of their lives. On every day of their working lives, doctors who have spoken to this Committee talk to those people. They are treating exactly the kind of patients who may seek assisted dying if the Bill becomes law. They are deeply concerned that if doctors raise the subject of assisted dying with their patients it will, in too many cases, seem like a suggestion.

I appreciate that this is a private Member’s Bill and not a Government Bill, but that places an even heavier burden on us to get things right. We cannot ignore the testimony of those who have the most relevant experience. Too many Government Ministers, MPs and local councils from all parties, including mine, have done that in recent decades.

For example, the sub-postmasters and sub-postmistresses said for years that the Horizon system was not working, but Ministers from my party, and from the Conservatives and the Liberal Democrats, said that they were wrong. Time and again, they were dismissed. Ministers thought that they knew more than the people who were using Horizon on a daily basis. Now we know exactly who was right.

Similarly, for three decades, several thousand NHS patients, mainly haemophiliacs, claimed that they had been negligently given transfusions of blood infected with hepatitis and HIV. Minister after Minister, first from the Labour Government of the ’70s, then from the Conservatives, then Labour and then the Conservatives again, insisted that no such thing had happened. Some conceded that perhaps it had happened—but on a small scale. In 2017, to her credit, the then Prime Minister Theresa May announced a public inquiry into those claims. It turned out that the patients were right and the Ministers had been wrong.

That is what I am talking about. Several highly experienced palliative medicine doctors warned us—

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

Kim Leadbeater Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Daniel Francis]

I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain.

We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.

[Kim Leadbeater (Spen Valley) (Lab)]

My hon. Friend makes an interesting point, but the purpose of the Bill is that a person with a terminal cancer diagnosis and six months left to live would have the choice of assisted death. As we have heard, they might have seen the suffering of relatives with a similar cancer, and they might have seen what their death looked like. I understand that people might disagree, but that is the purpose of the Bill.

[Daniel Francis]

I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges.

We should still be concerned about legal review of the Bill, based on indirect disability discrimination. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way.

If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.

Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve.

I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.

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[Stephen Kinnock]

My hon. Friend makes an excellent point. She brings us back to the fundamental point made in the Bill, which is that it has to be “an inevitably progressive illness”. Eating disorders do not fall under that definition: that is very clear. I hope that that explanation and the observation that I have made on the other amendments are helpful to members of the Committee in their consideration.

[Kim Leadbeater]

I will keep my comments brief, because we have had a very thorough discussion today. I will first speak briefly to amendment 123, tabled by my hon. Friend the Member for Broxtowe. Amendment 123 would change “an inevitably” progressive disease to “a typically” progressive disease. [Interruption.] Is that the next grouping? Oh, I am peaking too soon—my apologies, Mr Dowd.

I will come back to my hon. Friend the Member for Broxtowe, but let me turn to amendments 399, 400 and 401, on the exclusion of “medical condition”, which the hon. Member for East Wiltshire submitted a few days ago, before the end of the recess. I looked at them over the weekend and was very interested to hear his reasoning for them today. This is the purpose of the Committee; I have listened carefully to what the hon. Gentleman has said, and he has made some valuable points. All along, I have taken the view that this legislation must not only be the strongest anywhere in the world, but be very clear in its intentions and leave no room for ambiguity regarding who is entitled to request assistance under its provisions.

I am very comfortable with the definition of terminal illness in the Bill, but across the world—I have done lots of research into this, as I know other colleagues have—some jurisdictions use the term “medical condition” or, actually, just the term “condition”, and others do not. Many in Australia do, but in New Zealand, for example, which has a similar law to what is being proposed here, “medical conditions” do not feature, nor do they in a number of states in America.

While I do not necessarily think that it would definitely be problematic to include the term “medical condition”, I appreciate the argument that the hon. Gentleman has made. We have to be as cautious as possible to ensure that the Bill achieves its purpose but does not create a lack of clarity. That point has been very well made.

The advice that I have received from officials is that, as the hon. Gentleman suggested, “medical condition” does not have a clear legal definition and could therefore be seen as imprecise. That does worry me. The purpose of the Bill is clear—it is in the title. It is to give choice to terminally ill adults at the end of life. They must have a clear, settled and informed wish, and be expected to die within six months, in circumstances that are inevitably progressive and cannot be reversed by treatment. The hon. Gentleman has, I believe, helped to make that even clearer, and I am grateful to him for doing so.

[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.

[Danny Kruger]

I am delighted to hear it. I am grateful to the hon. Lady and to other hon. Members who have indicated their sympathy for the amendment. I look forward to the Division and to the Minister’s decision.

May I follow up on a point made by the hon. Member for Bradford West? I do not know whether the hon. Member for Spen Valley would like to intervene to help me understand the point. Amendment 181 would redraft clause 3(2) to make it clear that a person does not qualify as terminally ill

“only because they are a person with a disability or mental disorder”.

It would add to clause 3(2) the following additional sentence:

“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if…the person meets the conditions in paragraphs (a) and (b)”.

Does the hon. Member for Spen Valley agree that that will essentially mean that the clause does nothing? It confirms the terms of eligibility set out earlier in the Bill, and confirms that a person would still be eligible to receive an assisted death if they had conditions that were a consequence of a mental disorder or a disability. If she feels like intervening on me, I would like her to help me understand what that additional sentence adds. To my mind, it negates the purpose of the clause.

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[Rebecca Paul]

I thank the hon. Member for that thoughtful intervention, and I completely concede that it is not entirely clear, and there are different sources that describe it differently, which, for a non-medical person like myself, makes it difficult. There are certain websites, including NHS England, that may reference it as “progressive”, but equally I am sure that there are other sources that do not describe it in the same way. The hon. Member for Harrogate and Knaresborough makes a really good point, and he will see that I quite often talk about things arguably being the case; I am not saying that it definitely is—I am just highlighting that there is a risk, because if people disagree on whether it is progressive, that is when we have an issue. I see this as an opportunity to tighten up any of that potential risk.

I would say the ordinary person on the street would not expect diabetes to ever fall within the definition of a terminal illness, yet there is a risk that it could do, for the reasons I have explained. That means that the drafting of clause 2 is not quite tight enough in my view.

[Kim Leadbeater]

Just before the hon. Lady moves on, we may actually have come to a very sensible position based on the other amendments we have been discussing—amendments 399 to 401. I have done a little bit of googling, and diabetes generally is referred to as a “condition”. It might be referred to in other ways as well, but maybe that would be another reason for us all to support amendments 399 to 401.

[Rebecca Paul]

I thank the hon. Lady for that extremely good news. That would definitely be helpful and provide some reassurance.

Amendments 9 and 10 are essential to ensure that those people who are never intended to eligible for assisted dying under this Bill are kept outside of it. Amendment 9 seeks to ensure that it is not just illnesses that can be reversed by treatment, but illnesses where the progress can be controlled or substantially slowed by treatment, that are ineligible—diabetes being the classic case, which can be slowed and controlled by treatment. Amendment 10 further bolsters that by ensuring that treatments that improve prognosis are not disregarded under clause 2(1)(a).

The problem that we have with clause 2 in its current form is that it fails to distinguish between those who are truly at the end of their life and those who only become terminal if they do not access treatment. There is no requirement for a person to be receiving medical care when their prognosis is assessed, which means that many manageable but irreversible conditions—like diabetes, potentially, and chronic kidney disease—could qualify as terminal if treatment is stopped. Let us take the example of someone with type 1 diabetes, like my hon. Friend the Member for South Northamptonshire (Sarah Bool), who tabled these amendments. If she were to stop taking her insulin, she might meet the criteria for terminal illness under the Bill and qualify for an assisted death—I mean, I certainly hope she would not. Without treatment, type 1 diabetes could arguably be an inevitably progressive and irreversible condition that would result in death within weeks or months.

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[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.

--- 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.

--- Later in debate ---

[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.

--- Later in debate ---

[Kim Leadbeater]

On a point of order, Mr Dowd. If something is said that we know not to be correct, what should we do?

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[Danny Kruger]

The hon. Member invites me to suggest that I think it would be possible to draw a safe safeguard. I do not. I think that one month is better than six months, because with one month we can have more accuracy and doctors are more genuinely right when they say that someone is close to death at that point, while six months is much more inaccurate and 12 months is notoriously inaccurate. If we restrict the Bill by using a time limit, that limit should be as close to death as possible in my view.

[Kim Leadbeater]

Does the hon. Member agree that if we were to reduce it to one month, there would be absolutely no way to have the robust process set out in the Bill—or, indeed, I would argue, to have any sort of robust process?

[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.

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[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.

[Kim Leadbeater]

Colleagues will be pleased to know that, despite my copious notes, I do not intend to speak for very long, because I believe we have had a very thorough and robust debate on these issues. The Minister makes a valuable point on amendment 402, which I do not think anyone else raised. Coincidentally, it relates to the person in the Public Gallery this morning, whose mum had a horrible form of cancer and had to have her tongue removed. She would have stopped eating or drinking, but it was not a choice; it was an inevitable result of her condition. She would have been excluded from having an assisted death, which I am sure is not the intention of my hon. Friend the Member for Bradford West.

We have had an excellent debate and covered a lot of ground. I do not intend to add anything more on this group of amendments. I will only say that if we get a move on, we might be able to get through clause 2 before we close at 5 o’clock.

[Juliet Campbell]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 9, in clause 2, page 1, line 24, after “reversed” insert

“or the progress controlled or substantially slowed”.—(Rebecca Paul.)

This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.

Question put, That the amendment be made.

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

Kim Leadbeater Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q Dr Fellingham, given your experience of both the British and the Australian healthcare systems, do you believe there are any fundamental differences that would affect how assisted dying is implemented in this country? If there are, how might we be able to mitigate them?

Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can.

The healthcare systems are broadly similar. We are both first-world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for joining us this morning. I am interested in following up on what Dr Mewett said about the relationship with palliative care, which has an important role to play in end of life treatment. What is the relationship between assisted dying and the palliative care world like? Also, I would like to hear a bit more about the multidisciplinary board, which I think you set up, Dr McLaren. What does the multidisciplinary approach look like in your jurisdictions?

Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.

That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.

I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.

[Kim Leadbeater]

Q Was it a multidisciplinary board that Dr McLaren set up to look at the safety and quality of voluntary assisted dying?

Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.

Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.

It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.

We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q Dr Fellingham, to circle back to the issue of training, could you go into more detail about what the initial training consists of—the nature of it and the number of hours—and how that compares with the refresher training? What is the system for mentorship, supervision, appraisal and continuing professional development requirements?

Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.

To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.

Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.

Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.

We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.

In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.

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[The Chair]

I am afraid that has to bring this session to a conclusion. Dr McLaren, Dr Mewett and Dr Fellingham, thank you for giving up your evening for us. The Committee is indebted to you. Thank you very much indeed and have a good night. While we are changing over, I call the Member in charge of the Bill to move a motion.

[Kim Leadbeater]

I beg to move,

That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton-Smith OBE” and insert “Hourglass”.

Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon.

Question put and agreed to.

Examination of Witnesses

Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.

--- Later in debate ---

[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.

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

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

Kim Leadbeater Excerpts

Wednesday 29th January 2025 Public Bill Committees

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q Dr Fellingham, given your experience of both the British and the Australian healthcare systems, do you believe there are any fundamental differences that would affect how assisted dying is implemented in this country? If there are, how might we be able to mitigate them?

Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can.

The healthcare systems are broadly similar. We are both first-world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for joining us this morning. I am interested in following up on what Dr Mewett said about the relationship with palliative care, which has an important role to play in end of life treatment. What is the relationship between assisted dying and the palliative care world like? Also, I would like to hear a bit more about the multidisciplinary board, which I think you set up, Dr McLaren. What does the multidisciplinary approach look like in your jurisdictions?

Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.

That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.

I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.

[Kim Leadbeater]

Q Was it a multidisciplinary board that Dr McLaren set up to look at the safety and quality of voluntary assisted dying?

Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.

Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.

It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.

We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q Dr Fellingham, to circle back to the issue of training, could you go into more detail about what the initial training consists of—the nature of it and the number of hours—and how that compares with the refresher training? What is the system for mentorship, supervision, appraisal and continuing professional development requirements?

Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.

To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.

Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.

Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.

We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.

In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.

--- Later in debate ---

[The Chair]

I am afraid that has to bring this session to a conclusion. Dr McLaren, Dr Mewett and Dr Fellingham, thank you for giving up your evening for us. The Committee is indebted to you. Thank you very much indeed and have a good night. While we are changing over, I call the Member in charge of the Bill to move a motion.

[Kim Leadbeater]

I beg to move,

That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton-Smith OBE” and insert “Hourglass”.

Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon.

Question put and agreed to.

Examination of Witnesses

Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.

--- Later in debate ---

[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.

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

Terminally Ill Adults (End of Life) Bill (Money)

Kim Leadbeater Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Kim Leadbeater (Spen Valley) (Lab)]

On 29 November last year, in a debate widely described as showing Parliament at its best, this House sent the Terminally Ill Adults (End of Life) Bill into Committee for scrutiny by a majority of 55. It was the clear will of this place that the Bill should be allowed to proceed, in the knowledge that Members will have further opportunities on Report and beyond to decide whether it should be enacted. For that process to continue, the resolution before us today must pass.

Those who oppose the Bill on principle—something they are absolutely entitled to do—are seeking to suggest that there is something extraordinary or improper about this process, and on that they are simply wrong. This is a standard procedure that comes before this House all the time. Without it, there can be no Bill—that, I humbly suggest, is sadly what some people intend. This is not a blank cheque, as some Members have suggested. The right time to discuss the detail of what expenditure may be required is when we know the final shape of the Bill. At that point, if Members are concerned about the expenditure required, or indeed anything else, they can of course vote as they wish.

[Sir John Hayes (South Holland and The Deepings) (Con)]

The hon. Lady says that the right time to discuss the capacity of the judiciary and health service to deliver the Bill is presumably once it has completed its Committee stage, but should the Committee that considers the Bill have the impact assessment that allows it to scrutinise it line by line, mindful of the implications that it might have on our health service and our judiciary?

--- Later in debate ---

[Kim Leadbeater]

I respect the right hon. Gentleman’s question, but I would say that point is slightly out of the scope of the money resolution. However, I think it is a fair point, and I acknowledge that a lot of work is being done, as the Government said it would be, to look at the workability and operability of the Bill. I am working closely with Departments on those issues, and those conversations will continue, alongside the work of the Committee. I hope that provides him with some reassurance.

The other point is that I have never sought to stifle debate on the Bill or this really important issue; quite the contrary. I value it and I welcome it, but I do ask that it continues to be conducted in the same respectful and considered manner as on Second Reading. Where we disagree, let us do so with respect and without questioning each other’s motives or integrity.

[Ruth Cadbury (Brentford and Isleworth) (Lab)]

I congratulate my hon. Friend on how she has conducted this important debate. On stifling debate, does she share my hope that there will be no vote against the money resolution, because such a vote would end debate? While there was a strong vote in support of the Bill, there were many strong arguments for amendment and there was opposition. Does she agree that that debate needs to happen as the Bill proceeds and not be stifled and ended today?

[Kim Leadbeater]

I absolutely agree with my hon. Friend. Having done such a powerful job of debating this issue on Second Reading, it is crucial that we continue that debate in the right manner, as Parliament voted to do. It would be wrong for anything that happens today to put a stop to that debate and those discussions.

Let us not forget that the public are watching our deliberations carefully and that the issue we are discussing means a huge amount to many people. It is extremely serious and, for many, hugely emotive. We owe it to our constituents to treat it with the seriousness it deserves. I ask Members to consider carefully what it would say about us as a Parliament if such an important debate were to be curtailed as a result of procedural manoeuvring, which, sadly, is what I worry is being attempted by some colleagues today.

The money resolution is not about the pros and cons or the detail of the Bill; it will simply allow for proper scrutiny—including of any cost involved—to continue, and mean that the Bill Committee can begin its important work. I urge Members to support the resolution.

[Several hon. Members rose—]

--- Later in debate ---

[Brian Mathew]

There would be added expense. Social workers are trained in understanding family dynamics, and need desperately to be involved in these situations.

[Kim Leadbeater]

I take that point on board. I had a very productive meeting with the Association of Palliative Care Social Workers yesterday, and we had a useful conversation on that issue.

[Brian Mathew]

I thank the hon. Lady.

Hospice and Palliative Care

Kim Leadbeater Excerpts

Monday 13th January 2025 Commons Chamber

[Mr Paul Kohler (Wimbledon) (LD)]

I beg to move,

That this House has considered hospice and palliative care.

First, I thank the Backbench Business Committee for granting time to support this important debate, and I thank colleagues from across the House for supporting my application and joining me today to discuss a subject that, to use an old cliché—but in no more apposite a context—is truly a matter of life and death.

When this House debated the Terminally Ill Adults (End of Life) Bill last November, the crisis in hospice funding and concerns over the provision of palliative care were a constant refrain in the subtext of many of the speeches from supporters and opponents of the Bill. As someone who entered the Chamber that morning undecided as to how I would vote, I became increasingly convinced throughout the five hours of powerful argument and testimony that no matter what the House decided, the time had come to address hospice funding for the provision of palliative care head on, for death is as much a part of life as living.

While as parliamentarians we readily focus on what makes a good life, we rarely consider what makes a good death. It is possible to have a good death, as I saw with my mother, who passed away in comfort at the beautiful Arthur Rank hospice in Cambridge, and with my father, who died in the exceptional palliative care facility at Bellevue hospital in New York. As a family, we remember those times as sad, but cathartic, with moments of laughter as well as tears, as when my father—somewhat confused towards the end of life, but with a glint still in his eye—asked, as I sat next to him stroking his forehead, whether I was a lady friend.

Sadly, however, too many in our society do not experience a good death, and we need to start asking why. The hon. Member for Spen Valley (Kim Leadbeater) bravely took on that challenge with her private Member’s Bill, and I hope that this debate will afford us an opportunity to build on those foundations.

[Kim Leadbeater (Spen Valley) (Lab)]

Does the hon. Member agree that the renewed focus on the hospice and palliative care sector is extremely welcome and overdue? Does he agree that the extra £100 million of investment shows how seriously this Government are taking the issue, showing that people approaching the end of life are fully supported in whatever choices they make?

[Mr Kohler]

I agree with the hon. Lady, and I will be coming to those points.

Today is not about rehashing the arguments made that Friday, but to allow Members time to discuss and reflect on this separate, but inextricably linked subject. It is not the last word on hospice and palliative care, but an important step in forging a consensus that I hope will unite us, no matter where we ultimately stand on assisted dying.

I began by referencing the crisis in hospice funding. Before I proceed further, I echo what the hon. Member for Spen Valley said and thank the Health Secretary for the £100 million in capital and digital moneys he announced last month. It will make a profound difference to the sector’s current financial position. I have been asked by individual hospices and Hospice UK to convey their genuine gratitude. In a similar vein, the Government’s recently announced commitment to extend the children’s hospice grant by a further year is deeply appreciated and equally vital to maintaining levels of service in this heartrending, but profoundly important part of the hospice movement. However, these are only short-term fixes and fail to provide the long-term funding and certainty critical to securing the future of the hospice movement.

Currently, only one third of hospice funding is provided by the Government, with the rest coming from charitable sources. That leaves hospices vulnerable to increased cost pressures, as can be seen in a recent Hospice UK survey, which found that at least 20% of hospices had cut services in the past year or were planning to do so. Becca Trower, the clinical director of the wonderful St Raphael’s hospice, which provides excellent care to residents in my Wimbledon constituency, was unambiguous when she told me:

“We have a funding crisis and we need to protect our hospice.”

Last year, that meant that St Raphael’s was forced to strip £1 million from its £6.5 million budget by ending its hospice at home service that provided vital care, advice and support to patients and carers in their own homes. It was a virtual ward, in fact, but not one that fitted within the NHS definition of such, which would have attracted the separate integrated care board funding available for such initiatives. In just one month, the cuts to the service directly impacted 26 patients, many of whom spent their last days taking up valuable hospital beds, dying in the one place they did not want to die and putting further pressure on the NHS. When the Government are aiming to move medicine into the community, it makes no sense for hospices to be forced into a position that achieves the opposite.

That contradiction is mirrored in the current funding settlement, where the Government have given with one hand and taken with the other by increasing employers’ national insurance contributions. The refusal to exempt charities will exacerbate the challenges confronting hospices. The amazing Shooting Star children’s hospice, for example, provides wonderful support for families in my constituency. It estimates that the change will add another £200,000 to next year’s cost base.

Hospices need certainty. Doubts over funding undermine morale and sap energy, making the recruitment and retention of staff another huge issue for the sector. To address these problems, the Government need to introduce a consistent, reliable funding mechanism that reflects the rising costs of care. Hospices consequently need to be included within the NHS’s much-anticipated 10-year health plan. In parallel, staffing needs must be addressed in the next NHS long-term workforce plan.

It should not be forgotten that hospices provide a variety of services in addition to palliative care, including emotional, psychological and spiritual support, as well as physio and occupational therapy, practical support, complementary therapies, respite care and bereavement services. Much of that is beyond the clinical, and not something that the NHS can be expected, nor can afford, to provide. That is why no one I spoke to in the hospice movement thought that hospices should be subsumed within the NHS. They provide a complementary service that extends well beyond the clinical, and to which a charitable funding model is more effective and appropriate.

Mental Health Treatment and Support

Kim Leadbeater Excerpts

Wednesday 7th June 2023 Commons Chamber

[Kim Leadbeater (Batley and Spen) (Lab)]

“We should be frank. We have not done enough to end the stigma of mental health. We have focused a lot on physical health and we haven’t as a country focused enough on mental health.”

Those are not my words, although I agree with them wholeheartedly. They were spoken in 2016 by the then Prime Minister, David Cameron. He went on to say that if we

“intervene much earlier with those suffering from poor mental health…we can stop problems escalating… By breaking the mental health taboo, by working with businesses and charities…I believe we can lead a revolution in mental health treatment in Britain.”

Yes, yes and yes. My question is: why, seven-and-a-half years and four Tory Prime Ministers later, are we still waiting? Mr Cameron has long departed these Benches. This is not the occasion to lament the mess that he left behind, but the experience in my constituency—and, I respectfully suggest, in the constituencies of many, if not all, hon. Members—is that the Government’s approach to mental health remains, all these years later, wholly inadequate.

We have heard a lot of statistics in the debate. The numbers matter, because they show the overwhelming scale of the problem that we are facing. Every one of those numbers is an individual, and around them is a network of family and friends whose lives are impacted day in, day out by the very real challenges of confronting mental illness. I have met many such individuals and families in my constituency. Just last week, I hosted a roundtable at which I heard heartbreaking stories of such daily struggles, many of which involve children and young people.

Amelia is now 16. She was diagnosed with autism at the age of seven. For the past nine years, her mum, Anna, and her family have been trying to get help and support, and they are on their knees with exhaustion. Amelia has attempted to take her own life several times, and has been so let down by the system that she says that she just does not trust it anymore. It feels to her that she only gets any kind of support when there is an absolute crisis. I believe that, if she had got the support that she needed a long time ago, she and her family would be in a much better place today.

Eli is 10. He has been diagnosed with Tourette’s syndrome. He has various tics affecting his eyes, face, neck, back, hands and feet. He is a fantastic young man, but he is regularly in pain, which affects his ability to cope with days at school and has a huge effect on his mental health. Until recently, he was told that he just had conjunctivitis. His mum, Natalie, told me that she has struggled to find the psychiatric support Eli needs, and every time she calls CAMHS she is passed from person to person. She has been told that there are no NICE guidelines on Tourette’s and the best they have been offered to date has been worry management.

Those are just two examples, but they reflect a much bigger problem across society and in all our communities. I have meetings regularly with teachers across Batley and Spen, but we spend far more time discussing the mental health needs of their pupils and their families than we do the many other challenges faced in education—another sector that is underfunded and under-resourced. We cannot keep pushing this issue back on schools. Teachers do an amazing job, but we cannot expect them to take on responsibility for what is a widespread societal health issue because of more than a decade of lack of focus and national leadership on mental health.

It is not just teachers. Because we do not have the mental health experts and provision that we need in the places where we need them, it falls to others in the community to pick up the pieces. In Batley and Spen, I am incredibly proud of the many voluntary organisations, sports clubs and charities that do a magnificent job week in and week out under huge pressure. I pay tribute to groups such as Andy’s Man Club, Game Changerz, Blue Tulips, Team Daniel and Luke’s Lads, but the voluntary sector is propping up the NHS and society as a whole. That is not sustainable and it is simply not right. We would not expect teachers, sports coaches, voluntary groups and others to deal with a burst appendix, a broken leg or an ear infection, so why are we asking them to deal with the mental health crisis? They are, of course, part of a wider, holistic solution, but they should not be the only solution. That is not the parity of esteem between mental health and physical health that David Cameron spoke of. While I am hugely optimistic about the excellent plans Labour has to address the mental health crisis, people such as Natalie, Eli, Anna and Amelia cannot wait any longer, which is why today’s debate is so important.

Oral Answers

Kim Leadbeater Excerpts

Tuesday 25th April 2023 Commons Chamber

[Neil O’Brien]

We are leaving no stone unturned. Last month, we passed legislation enabling the GDC to increase the capacity of the ORE. We have also made it easier for overseas dentists to start working in the NHS: as of 1 April, no dentist will need to pay an application fee. We also want to radically reduce the time that dentists spend in performers list validation by experience, and we will set out further steps in our dentistry plan.

[Kim Leadbeater (Batley and Spen) (Lab)]

T2. What is the Secretary of State doing to tackle the severe national shortage of desperately needed psychiatric intensive care beds, which means that people, including some of my constituents, have to travel hundreds of miles to see their loved ones?

[Maria Caulfield]

We are spending an additional £2.3 billion a year on mental health services, and we have recently announced £150 million for crisis community support, because we are trying to reduce the number of people being admitted in the first place by treating them at an earlier point in their mental health illness. That will free up beds, but it will take time. Community crisis intervention is the way in which we want to make progress.