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

Kit Malthouse Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[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.

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[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.

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[The Chair]

With this it will be convenient to discuss the following:

Amendment 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.”

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.

Amendment 343, in clause 4, page 2, line 28, at end insert

“, including any relevant probabilities and uncertainties surrounding the person’s diagnosis and prognosis.”

This amendment would make clear that the doctor conducting an initial discussion is required to discuss the probabilities and uncertainties of any estimates of how long a person may have to live.

Amendment 344, in clause 4, page 2, line 29, at end insert

“, including 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.”

This amendment would make clear that the doctor conducting an initial discussion is required to discuss the impact of any treatment available.

Amendment 275, in clause 4, page 2, line 30, leave out “any available” and insert “all appropriate”.

Amendment 108, in clause 4, page 2, line 31, at end insert

“and offer to refer them to a registered medical practitioner who specialises in such care for the purpose of further discussion.”

This amendment would require the doctor who has an initial discussion with a person about assisted dying to offer to refer them to a specialist in palliative, hospice or other care.

Amendment 183, in clause 4, page 2, line 31, at end insert—

“(and, 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)).”

This amendment emphasises that the initial discussion mentioned in subsection (3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4).

Amendment 425, in clause 4, page 2, line 31, at end insert—

“(4A) Where a person indicates to a registered medical practitioner their wish to seek assistance to end their own life in accordance with this Act, they must be referred to a multidisciplinary team to explore options for relevant care and support.

(4B) The Secretary of State may by regulations specify the requirements for the multidisciplinary team under subsection (4A).

(4C) The regulations must include a requirement for the multidisciplinary team to include all of—

(a) a registered medical practitioner or registered nurse,

(b) a person registered as a social worker in a register maintained by Social Work England or Social Work Wales, and

(c) a practising psychiatrist registered in one of the psychiatry specialisms.”

Amendment 53, in clause 7, page 4, line 8, at end insert—

“(ca) has relevant and available palliative care options.”

This amendment would mean that someone is only eligible for assistance in ending their own life under this Act if they have relevant and available palliative care options.

Amendment 54, in clause 7, page 4, line 17, leave out “(g)” and insert “(h)”.

This amendment is consequential on Amendment 53.

Amendment 426, in clause 7, page 4, line 26, at end insert—

“(4) The coordinating doctor may not take the steps set out in subsection (3) unless they receive confirmation from a multidisciplinary team that the person has had a meeting with that multidisciplinary team as specified in section 4.”

Amendment 286, in clause 9, page 5, line 36, 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.”

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.

Amendment 424, in clause 40, page 23, line 37, at end insert—

“‘preliminary discussion’ means a discussion of a kind mentioned in section 4(3);”.

This is a drafting change.

[Kit Malthouse]

On a point of order, Mr Efford. I seek your guidance on the votes that we have just taken on the last group of amendments. If any Member, or any external person, were to attempt to misrepresent part of the debate on those amendments, what could we do? For example, in respect of amendment 368, tabled by my right hon. Friend the Member for East Hampshire, with regard to people with Down’s syndrome, somebody could imply or state on social media that the Committee has refused to look at accommodations for those people, therefore disregarding their welfare under the Bill. As you will be aware, that would be a serious misrepresentation of the debate and the intention of the Committee. If a Member of the House or somebody external did that, what measures could we take to correct it?