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

Stephen Kinnock Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[The Chair]

I remind the Committee that with this we are discussing the following:

Amendment 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”.

Amendment 124, in clause 4, page 2, line 16, leave out from “practitioner” to end of line 20 and insert

“shall discuss assisted dying with a person unless that matter is first raised by that person.”

The amendment prevents a registered medical practitioner from discussing the provision of assistance under the Act unless that matter is first raised by that person.

Amendment 319, in clause 4, page 2, line 20, after “person” insert

“who has attained the age of 18”.

Amendment 339, in clause 4, page 2, line 20, after “person,” insert

“, unless that person has a learning disability or is autistic, in which case—

(a) the person must be provided with accessible information and given sufficient time to consider it; and

(b) at least one of a—

(i) supporter, or

(ii) independent advocate;

must be present for the discussion.”

This amendment would require that, if the person is autistic or has a learning disability, they must be given accessible information and sufficient time to consider it. Additionally there must be at least either a supporter or independent advocate.

Amendment 368, in clause 4, page 2, line 20, after “person” insert

“, unless that person has Down syndrome, in which case the registered medical practitioner must be acting in accordance with any statutory guidance issued by the Secretary of State under the Down Syndrome Act 2022 to meet the needs of adults with Down syndrome.”

Amendment 320, in clause 4, page 2, line 21, after “person” insert

“who has attained the age of 18”.

Amendment 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.”

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

Amendment 276, in clause 4, page 2, line 31, at end insert—

“(4A) A medical practitioner must not conduct a preliminary discussion with a person under subsection (3) until a period of 28 days has elapsed, beginning with the day the person had received a diagnosis of the terminal illness.”

This amendment would mean a doctor could not conduct a preliminary assessment until 28 days from the day the person received a diagnosis of the terminal illness.

New clause 6—Advance decision of no effect—

“An advance decision, made pursuant to sections 24 to 26 of the Mental Capacity Act 2005, which stipulates that the maker of the decision, having become incapacitated, wishes to be provided with assistance to end their own life in accordance with this Act, shall be null and void and of no legal effect.”

The new clause prohibits an individual from making an advanced directive for voluntary assisted death in the eventuality he or she were to become incapacitated at a future date.

[The Minister for Care (Stephen Kinnock)]

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

As I have stated previously, my remarks on behalf of the Government on these amendments will provide a factual explanation. I shall not offer a position on how the Committee should vote, as that remains a matter of conscience. The overarching theme of the amendments relates to the requirement on how and when a medical practitioner may raise the matter of assisted dying.

Clause 4(2), as drafted, provides that nothing prevents a medical practitioner from using their professional judgment to decide when to raise the subject of assisted dying. Amendment 278 seeks to prevent a doctor from raising the subject of assisted dying if the person has a recorded advance decision in their medical records that states that in future they will not want assisted dying.

The Mental Capacity Act 2005 enables a person with capacity to make an advance decision to refuse a specified form of treatment in future, should they lack capacity. A person who has lost capacity under the Mental Capacity Act would not be eligible for assisted dying under the Bill. Where such an advance decision is in place, the effect of the amendment would be to prevent the doctor from raising the subject of assisted dying, unless the person indicates to the doctor that they wish to change their previous decision, that they wish to seek assistance under the legislation and that they have the capacity to do so.

Technically, amendment 278 appears unnecessary, because advance decisions under the Mental Capacity Act are not relevant to assisted dying. That is because advance decisions are about refusing treatment at a time when a person no longer has capacity, and assisted death would be available only to those who have capacity.

As drafted, 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”.

but clause 4(2) specifies that they may do so if, in exercising their professional judgment, they consider it appropriate. Amendment 8 would prevent a registered medical practitioner from raising with a person the subject of provision of assistance under the Bill, unless the person has indicated to that practitioner or to another registered medical practitioner that they wish to seek assistance to end their own life. The effect would be that any conversation on assisted dying will need to be patient-initiated, and not at the discretion of the medical professional within a wider conversation about end-of-life care.

The effect of amendment 124, as with amendment 8, would be to prevent a registered medical practitioner from raising with a person the subject of provision of assistance under the Bill. That would mean that the person will need to indicate to a registered medical practitioner that they wish to seek assistance to end their own life before an initial discussion can take place. The effect would be that assisted dying can be discussed only if the patient has initiated the conversation.

The Government’s assessment of amendment 319 is that, as drafted, it would not prevent the subject of an assisted death from being discussed with a person who is under 18. There is already a requirement that, to be eligible for the provision of assistance under the Bill, a person must be aged 18 or over at the time that they make their first declaration under clause 1(1)(b).

Amendment 319 would impose additional requirements on the approach that a medical practitioner must make if raising the subject of assisted dying with a person who has a learning disability or is autistic. It would require the person to be provided with accessible information and given sufficient time to consider it. It would further require that they must have a supporter and/or independent advocate present for the initial discussion. The amendment would require that a person with autism or a learning disability must have a supporter or independent advocate present for the discussion, even when they have capacity or are high-functioning. Autism is a spectrum disorder, meaning that autistic people have diverse and varying needs, so the effect of the amendment would vary among individuals.

It is already the case that all registered medical practitioners, in meeting their professional standards, are expected to communicate information clearly and effectively. That includes allowing sufficient time for the individual to consider and process the information provided. For example, the General Medical Council’s “Good medical practice” states that all GMC-registered clinicians

“must take steps to meet patients’ language and communication needs”

to support them to

“engage in meaningful dialogue and make informed decisions about their care.”

Amendment 368 would require registered medical practitioners, when deciding if and when it is appropriate to discuss assisted dying with a person with Down’s syndrome, to act in accordance with the Down Syndrome Act 2022. The Act requires the Secretary of State to issue guidance to relevant authorities on what they should be doing to meet the needs of people with Down’s syndrome. Although this work is being taken forward as a priority by the Department, no statutory guidance has yet been published under the Act.

The relevant authorities in scope of the Act are institutions such as NHS trusts. The Act does not provide for guidance to be prepared for individual doctors. The relevant authorities must have due regard to the statutory guidance, which enables them a degree of discretion in following it, but the amendment would require medical practitioners to act in accordance with the guidance. It might therefore create uncertainty as to how a doctor can comply with their obligations under the Bill.

[Danny Kruger (East Wiltshire) (Con)]

I hear what the Minister says—the guidance does not exist and there is concern that the amendment may therefore induce some confusion—but would the answer not be to put a commitment into the Bill that the Secretary of State will issue guidance on how the 2022 Act could be applied in the context of the Bill?

In the light of our conversation at the Committee’s last sitting, I put on the record my intention to press the amendment if the Minister cannot give a commitment now to introduce an amendment later that the Secretary of State will introduce statutory guidance to ensure that proper care is taken of people with Down’s syndrome in accordance with amendment 368.

[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.

[Kit Malthouse (North West Hampshire) (Con)]

I apologise for having arrived ever so slightly late, Mr Efford. In the Minister’s view, is it conceivable that he or any future Minister—or, indeed, the current or any future chief medical officer—would not consult with groups representing those with Down’s syndrome in drawing up the various guidelines on the Bill?

[Stephen Kinnock]

Extensive consultations have taken place with all the key groups and advocacy organisations on Down’s syndrome in the drafting of the guidance. The guidance is very close to publication; once it is published, it will form the basis of a further consultation. It is an iterative process.

[Kit Malthouse]

Perhaps I was not clear. I meant the guidance on this Bill. Although the Minister may not necessarily be able to say what will be in it, is it conceivable that the CMO, in drawing up guidance as a requirement under the Bill, would not consult Down’s syndrome groups? My point is that, given what has been expressed and the desire of the Committee, I cannot see that a CMO would not talk to Down’s syndrome groups in any event.

[Stephen Kinnock]

I thank the right hon. Gentleman for that clarification and apologise for my misunderstanding; I thought he was referring to the guidance that we are currently working on under the terms of the 2022 Act. Yes, absolutely: the Bill currently specifies a two-year commencement period, within which a whole range of operationalisation work will need to be done. All of that will need to be consulted on; we will not do it all in an ivory tower from Whitehall or Westminster.

[Danny Kruger]

It is welcome that a commitment has been made to meet my right hon. Friend the Member for East Hampshire, who tabled the amendment, but a commitment to consult is not the same thing as specific protections in the Bill for people with Down’s syndrome. What we really need is a commitment in the Bill that there will be statutory guidance. There will be opportunities for that later, so we may not need to press the amendment to a vote, but if we cannot have a commitment, we must press it.

[Stephen Kinnock]

It is absolutely the hon. Member’s prerogative to press the amendment to a vote if he so wishes. As things stand, because of the baseline, which is the GMC guidance that I have just read out, we constantly go back to the Government’s position that the current corpus of guidance, regulations, advice, training, expertise and professional judgment is, in essence, satisfactory to the Department. We believe in and rely on the professional judgment of the experts in the field. That remains our fundamental position.

The effect of amendment 320 would be that the safeguards in clause 4(4) in respect of the preliminary discussion apply only where the person seeking assistance is aged 18 or over. The amendment would not prevent a discussion with a person under 18. As the Committee will be aware, there is already a requirement that, to be eligible for the provision of assistance under the Bill, a person must be 18 or over when they make their first declaration under clause 1(1)(b).

Amendment 270 would make it a requirement for a registered medical practitioner to ensure that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying. The amendment does not state what is to happen if the practitioner considers that there are remediable suicide risk factors. As the Committee will be aware, we rely on medical practitioners to make judgments in relation to their patients that draw on their training, experience and expertise. We would expect the judgment and skill of a medical professional to be brought to bear where there are remediable suicide risk factors.

Amendment 276 would mean that a person is unable to have a preliminary discussion or make a first declaration to be provided with assistance to end their own life until 28 days after receiving a terminal diagnosis. The amendment would add an additional pause into the process for a person who has received a terminal diagnosis in the preceding 28 days. The 28-day pause would apply regardless of the patient’s prognosis, even if they had only one month left to live, for example.

New clause 6 would ensure that an advance decision to refuse treatment under the Mental Capacity Act 2005 cannot be used to seek assisted dying. Our analysis suggests that the new clause is not necessary, because an assisted death is available only to those with capacity, whereas advance decisions provide for a person to be able to refuse treatment at a future time when they have lost capacity. If a person still has capacity, they may be eligible for an assisted death. If they do not have capacity, they will not be eligible, irrespective of whether they have made an advance decision.

That concludes my remarks on this group of amendments. As I say, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could change. However, I hope my comments and observations are helpful to Committee members in considering the Bill.

[Rebecca Paul (Reigate) (Con)]

I appreciate the opportunity to speak briefly, Mr Efford. Many other speakers have already made excellent points in support of the amendments, so I will not repeat them, but I would like to put on record one pertinent point.

During these proceedings, there has been a tendency by some to speak as though assisted dying were another type of treatment or healthcare option being offered by medical practitioners, rather than a completely different and separate offering. I have grave concerns about that. The legal norm, and GMC guidance, is that patients should be offered all reasonable medical treatments. A medical treatment can be defined as something that combats disease or disorder. It is fundamentally about healing, relief of symptoms, recovery and cure. Straightaway, we have a conflict. Assisted dying ends the life of a person. It is not a treatment in the normal sense—

--- Later in debate ---

[Dr Tidball]

I will make progress.

In reply to a question from me about those who are seeking assistance, Dr Jane Neerkin, a consultant physician in palliative medicine, said:

“For them, it is about trying to regain some of that control and autonomy and being able to voice for themselves what they want. That is what I tend to see that people want back at the end of life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 201, Q263.]

Importantly, amendments 183 and 275 would strengthen clause 4 to ensure that we avoid a situation that gives those with the most social capital more choice, while leaving those who might otherwise be unaware of all other options available to them without that choice. If the Bill is passed by Parliament without them, it will exacerbate health inequalities rather than abating them.

Together, the amendments expound and elaborate on the need for discussion of all appropriate palliative and other end-of-life options available to someone with a six-month terminal illness. I commend them to the Committee.

[Stephen Kinnock]

The amendments would make changes to the discussion between the medical practitioner and the patient. They are largely focused on clause 4, on the initial discussions, but several are thematically linked or related to later clauses.

Amendment 342 would impose a requirement on the registered medical practitioner to conduct a preliminary discussion with a person where that person has indicated that they wish to seek assistance to end their own life. As it stands, the Bill allows registered medical practitioners to opt out should they not wish to hold that conversation with someone, although they have an obligation under clause 4(5) to refer an individual to another medical practitioner for that discussion.

The amendment would remove that discretion and thus remove the opportunity for a medical professional to opt out of having the preliminary discussion. That may conflict with the principle set out in clause 23 that no registered medical practitioner or other healthcare professional is under any duty to participate in the provision of assistance. Our analysis suggests that in removing discretion as to participation, the amendment could interfere with an individual’s rights under article 9 of the European convention on human rights, on the freedom of thought, belief and religion, and article 14, on the prohibition of discrimination.

Amendment 285 would require the registered medical practitioner who conducts a preliminary discussion with a person on the subject of an assisted death to discuss with them, in consultation with a specialist, the person’s diagnosis and prognosis, any treatments available and their likely effects, and any available palliative, hospice or other care. The amendment would therefore require additional registered medical practitioners or other specialists to be consulted as part of the preliminary discussion under clause 4(4). The additional time required for consultation with specialists would be likely to lengthen the period over which a preliminary discussion can take place.

I also note that clause 9, “Doctors’ assessments: further provision”, will already require the assessing doctor to make such other inquiries as they consider appropriate in relation to the first and second assessments.

[Naz Shah]

The Minister’s point speaks to what my hon. Friend the Member for Stroud and I have spoken about in relation to the amendment, so I wonder which bit he supports. The Minister says that there will be extra time, but my hon. Friend pointed out that doctors do this routinely, so the objection is only that it will be on the face of the Bill. I just want to understand the Minister’s position on that.

[Stephen Kinnock]

If I understood the point that my hon. Friend the Member for Stroud was making, I think it was that the basic provisions in place enable doctors to carry out their work based on their experience and expertise, whereas the amendment would require additional registered medical practitioners or other specialists, so that would be in addition to what my hon. Friend was talking about.

I turn to amendment 343. As the Bill stands, a registered medical practitioner undertaking a preliminary discussion with a patient is required to discuss the person’s diagnosis and prognosis. The amendment would require a registered medical practitioner also to discuss any relevant probabilities and uncertainties of a person’s diagnosis and prognosis. It would put an additional legal requirement on what needs to be discussed during the preliminary discussion with the patient. In considering whether the amendment is required, the Committee may wish to note that all doctors acting in accordance with the General Medical Council’s “Good medical practice” are expected to discuss uncertainties about diagnosis and prognosis, and potential risks and uncertainties about treatment.

Under clause 4, the registered medical practitioner conducting the preliminary discussion must discuss any treatment available to the patient and the likely effect. Amendment 344 would require the registered medical practitioner conducting the initial discussion to discuss, as part of the conversation on the treatments available, the risks and benefits of such treatment, potential side effects and the impact of the treatment on the person’s quality and length of life. As with amendment 343, the Committee may wish to note, when considering whether the amendment is required, that all doctors acting in accordance with “Good medical practice” are expected to discuss the risks, benefits, uncertainties and the likelihood of success of treatment with a patient.

Amendment 275 would change the wording of clause 4(4)(c) to “all appropriate palliative hospice and other care”. That would require a registered medical practitioner who conducts a preliminary discussion with a person on the provision of an assisted death to explain and discuss palliative and hospice care on the basis of appropriateness for the individual, not on the basis of the care that is available. 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—

[The Chair]

Order.