Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting)

Marie Tidball Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Sarah Olney]

I want to make a couple of further points in response to some of the those raised by Members. First, I have looked at amendment 500, which the hon. Member for Spen Valley directed me to, and I thank the hon. Member for Reigate for showing it to me—her record keeping is much better than mine. I was going to say that amendment 500 does not cover a lot of the areas that I have raised, but the hon. Member for Spen Valley has just referred me to amendment 455.

However, it is important to say that amendment 455 refers only to “protected characteristics” under the Equality Act 2010. I specified particular characteristics in amendment 273 in response to some of the evidence that we received. In particular, I included the person’s age in response to evidence that we received from Together for Short Lives, which represents children’s hospices including Shooting Star in Richmond. It had specific concerns about the issue of assisted death being raised with young people under 18, and that is why I specified that. I also included gender and ethnicity, which I mentioned earlier, and that came through very strongly in a lot of the oral evidence that we received.

To address the point made by the hon. Member for Sunderland Central, I did not hear sexuality being raised as a risk factor at any point. Obviously, members of the LGBTQ+ community experience a great deal of discrimination, but I have not heard it raised as a specific risk factor for assisted dying, which is why it is not on the list. I have included the person’s postcode because I do not know a better way of assessing whether someone is from a low-income background. I particularly draw the attention of hon. Member for Spen Valley to that characteristic, because it is obviously not protected under the Equality Act, so I remain really concerned.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

For the avoidance of doubt, socioeconomic status would have been a protected characteristic under the Equality Act, were it not for the previous Conservative Government.

[Sarah Olney]

I thank the hon. Lady for that useful intervention. As I say, socioeconomic status is not currently a protected characteristic under the Equality Act.

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[Kim Leadbeater]

That is very helpful indeed. In that case I am very pleased to support amendment 523 in the name of the hon. Member for East Wiltshire as well. I am also minded to support amendment 394 in the name of my hon. Friend the Member for Bexleyheath and Crayford, which I think is very sensible, like his other amendments that I have supported. I am not sure that amendment 534 in the name of my hon. Friend the Member for Ipswich is entirely necessary, but I fully understand the sentiment and therefore I am minded to support that amendment as well.

That brings me on to the final amendment, 448. I wanted to support this amendment, but I have taken on board the Minister’s comments on the lack of clarity about what it means to be registered and qualified. As such, I cannot support that amendment this evening, but I think we could look at coming up with something on Report that would achieve the objective that my hon. Friend the Member for York Central intended.

Amendment 447 agreed to.

Amendment made: 394, in clause 30, page 18, line 24, at end insert—

“(ba) the provision of information and support to persons with learning disabilities who are eligible to request assistance to end their own life under this Act, including the role of advocates for such persons;”—(Daniel Francis.)

Amendment made: 416, in clause 30, page 18, line 25, leave out paragraph (c).—(Jack Abbott.)

This amendment is linked to Amendment 417.

Amendment made: 430, in clause 30, page 18, line 30, at end insert—

“(da) responding to unexpected complications that arise in relation to the administration of the approved substance under section 18, including when the procedure fails;”.—(Daniel Francis.)

[Dr Tidball]

I beg to move amendment 517, in clause 30, page 18, line 30, at end insert—

“(da) arrangements for a qualifying person requesting assistance to end their own life to receive the support of an independent advocate under section [Independent advocate].”

This amendment would add arrangements for a qualifying person to receive the support of an independent advocate (NC25) to the list of matters that codes of practice may be issued on.

[The Chair]

With this it will be convenient to discuss new clause 25—Independent advocate—

“(1) The Secretary of State must by regulations make provision as to the appointment of persons as independent advocates.

(2) The regulations may, in particular, provide—

(a) that a person may act as an independent advocate only in such circumstances, or only subject to such conditions, as may be specified in the regulations;

(b) for the appointment of a person as an independent advocate to be subject to approval in accordance with the regulations;

(c) persons that may appoint independent advocates;

(d) provision for payments to be made to, or in relation to, persons carrying out the function of an independent advocate under this section;

(e) training that such advocates must undertake before being appointable; and

(f) obligations on persons performing functions on this Act to ensure the presence of an independent advocate for a qualifying person.

(3) The role of independent advocates is to provide support and advocacy to a qualifying person who is seeking to understand options around end of life care, including the possibility of requesting assistance to end their own life, to enable them to effectively understand and engage with all the provisions of this Act.

(4) For the purposes of subsection (2) a person is a ‘Qualifying person’ if they—

(a) have—

(i) a learning disability;

(ii) a mental disorder under section 1 of the Mental Health Act 1983; or

(iii) autism; or

(b) they may experience substantial difficulty in understanding the processes or information relevant to those processes or communicating their views, wishes or feelings; or

(c) they meet criteria that the Secretary of State may specify by regulations.

(5) Regulations may not be made under this section unless a draft of the statutory instrument containing them has been laid before and approved by a resolution of each House of Parliament.”

This new clause would require the Secretary of State to, by regulations, make provision for independent advocates to provide assistance to qualifying persons.

[Dr Tidball]

It is a pleasure to serve under your chairship, Mrs Harris. I rise to speak to my new clause 25 and my related amendment 517. I note with pleasure that the Committee has agreed to amendment 447, which mandates the need for the code of practice. I also support amendment 394, tabled by my hon. Friend the Member for Bexleyheath and Crayford.

My new clause 25 would require the Secretary of State to make provision by regulations for independent advocates to provide assistance to qualifying persons under the Bill. Amendment 517 would add

“arrangements for a qualifying person…to receive the support of an independent advocate”

to the list of matters provided for by the codes of practice in clause 30.

The issue is deeply important to me. On Second Reading, I said:

“so often control is taken away from disabled people in all sorts of circumstances.

In order to ensure that there is compassionate choice at the end of life, it is right that the Bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards.”—[Official Report, 29 November 2024; Vol. 757, c.1052.]

Those safeguards must include strengthening the voices of disabled people, both in the Bill and in the monitoring of its impact on disabled people if it is ultimately enacted. I tabled new clause 25 and the related amendment 517 alongside my proposed new clause 27, which would mandate a disability programme board to strengthen disabled people’s voices, empowering and better enabling them to be treated with dignity and respect when they are a qualifying person seeking to understand their options around end-of-life care.

Subsection (3) of new clause 25 states:

“The role of independent advocates is to provide support and advocacy to a qualifying person who is seeking to understand options around end of life care, including the possibility of requesting assistance to end their own life, to enable them to effectively understand and engage with all the provisions of this Act.”

During one of the Committee’s oral evidence sessions, Professor Tom Shakespeare—the leading disability scholar and public policy expert—was asked which of the Bill’s measures could be strengthened to further protect disabled people. He said:

“We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c.144, Q181.]

My new clause responds to the evidence from witnesses during those sessions and augments proposals made by my hon. Friend the Member for Bexleyheath and Crayford. It extends those proposals in two ways. Under the new clause, “qualifying person” would include those with a learning disability, those with autism and, importantly, those who have a mental disorder under section 1 of the Mental Health Act 1983. It also extends the scope to cover those who, as set out in subsection (4),

“may experience substantial difficulty in understanding the processes or information relevant to those processes or communicating their views, wishes or feelings; or…meet criteria that the Secretary of State may specify by regulations.”

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[Dr Tidball]

I take on board and appreciate my hon. Friend’s point. I hope he will agree that subsection (3) emphasises the purpose of the new clause, which is that it should apply across the spectrum of access to assistance and enable people to effectively understand and engage with all of the provisions in the Bill. I very much wanted to ensure that it would apply and be accessible at every stage.

[Daniel Francis]

My hon. Friend knows my concerns but she knows that I will be supporting the amendment this evening.

Advocates must have an understanding of the available end-of-life options and be able to communicate clearly and explain to patients the medical treatments available: palliative care, social care and assisted death. That is quite complex. As I have said previously, my own experience of mental capacity relates to my daughter: she would never have the capacity to be able to make such a decision. But on a daily basis, including this morning, I have to explain a two or three-point decision-making process. It is vital that advocates are there and that they have the training.

For many people such as my daughter, who is almost blind as well as being learning disabled, there are additional communication skills given that they have those extra sensory difficulties. It is vital for people such as Mrs Cook’s daughter, who might be vulnerable to influence, that the advocate must be able to explain all the options clearly without pressurising the person down one route. I believe the amendment will provide important support to those with less capacity or difficulty in understanding all the options in front of them.

As I have said, the two things that I have banged on about consistently in this process have been about learning disability and mental capacity. There has been a conflict for me, even with this amendment, but I am confident that the amendment tabled by my hon. Friend the Member for Penistone and Stocksbridge comes from a very good place. We will come to this next week but, like my hon. Friend, I have consistently listened to Mencap’s evidence, which also talked about reviewing the Bill at an earlier stage than is currently envisaged. That is why I have tabled amendments 493, 494 and 495 for next week.

My view is that if the Bill becomes law, the system will work well if the regulations are implemented correctly. I will support the amendment tabled by my hon. Friend the Member for Penistone and Stocksbridge; I thank her for bringing it forward. I know that my hon. Friend the Member for Spen Valley has listened hard, and I am grateful. I think there will be a degree of unanimity this evening.

[Danny Kruger]

I pay tribute to the hon. Member for Penistone and Stocksbridge for the amendments that she tabled and to the work that she has been doing on our Committee. I regret her victory over my friend, the former MP for Penistone and Stocksbridge, but the hon. Lady is bringing a lot to Parliament and to this Committee.

I am happy to follow the hon. Member for Bexleyheath and Crayford in supporting the amendments. I do not know whether the hon. Lady is in a position to respond with a further speech or by intervening, but I have some concerns about their operation. I recognise that the role of the independent advocate exists in our system already, very usefully and importantly: I see its value and appropriateness for an assisted dying regime. But if the amendments are accepted, we will be introducing the role of the independent advocate with the sombre recognition that it is necessary, in consequence of a Bill that will allow doctors to discuss ending the patient’s life as an option with anybody, no matter how well-equipped or ill-equipped that person may be to handle such a conversation on their own, and no matter how old they are—they could even be 18 years old. I support the amendments, but I do so in recognition of the very significant dangers that I think the Bill represents to all potential applicants.

I want to ask the hon. Member for Penistone and Stocksbridge, or perhaps the Minister or the Bill’s promoter, whether they feel that the amendments go to the heart of the concerns raised by the hon. Member for Bexleyheath and Crayford. I am pleased to hear that he is satisfied and will support the amendments, although I echo some of the suggestions of concern that he just made.

New clause 25 makes it clear that the advocate is there to provide support if the person

“is seeking to understand options around end of life care, including the possibility of requesting assistance to end their own life”.

Amendment 517 addresses the need for a code of practice when a qualifying person is requesting assistance to end their own life.

My question is whether the new clause and the amendment fully cater for a situation in which that individual is not requesting assistance to end their own life—when they are not seeking to explore that particular option. Given that we have retained the right of medical professionals to raise the possibility of assisted dying unprompted with patients, I am concerned about whether, as I think the hon. Member for Bexleyheath and Crayford implied, the medical professional initiates the conversation, or the advocate themselves is supportive of assisted dying and they deliberately or inadvertently have the effect of encouraging the patient to consider that option.

As I think the hon. Member for Penistone and Stocksbridge said in her intervention on the hon. Member for Bexleyheath and Crayford, new clause 25 creates the role of independent advocate to provide support to a patient, to help them to effectively understand and engage with all the provisions in the Bill. It does not specify that the advocate should be obliged, equipped or experienced in supporting the patient to engage with other options.

[Dr Tidball]

First, it is necessary that a patient should be able to engage with all the provisions in the Bill. The reason I did not support the previous amendments from my hon. Friend the Member for Bexleyheath and Crayford was that they would only have provided advocacy at too late a stage and would not effectively support a patient at that point we talked about in clause 4, which is around the moment of seeking assistance. I hope that answers the question.

[Danny Kruger]

I am grateful to the hon. Lady. That is very helpful. That is my concern: we need to ensure all necessary support for the patient at the earliest stage possible.

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[Dr Tidball]

I should add that new clause 25(2)(e), on training, is central and will also assist in that respect. If the Chair will permit, that is why I talked about new clause 27, which builds in a strong structure that can reflect on how the provisions operate in practice.

[The Chair]

Order. The Member will have an opportunity to speak at the end of the debate. I call Danny Kruger.

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[Kim Leadbeater]

My hon. Friend the hon. Member for Penistone and Stocksbridge has made a powerful and passionate case for the provision of independent advocates, and, as always, has done an outstanding job of advocating for people with disabilities, including learning disabilities, mental disorders and autism, as she has done throughout this entire process.

It is essential that anybody considering the choice at the end of life made possible by this Bill should fully understand the nature and consequences of any decision they may make. These amendments have made me reflect on comments—I think made by the hon. Member for East Wiltshire a few weeks ago—about the purpose of the Bill. He proposed that the Bill is either about choice and autonomy or it is about safeguards. Actually, this group presents very clear evidence that it is and must be about both, and I hope he can support the amendments.

I take on board the Minister’s comments. I heard an element of caution from him, and I am happy to work with the Government and my hon. Friend the Member for Penistone and Stocksbridge if there are any further requirements prior to Report stage, but I am very happy to support the amendment and the new clause.

[Dr Tidball]

I am grateful for the support of my hon. Friends the Members for Spen Valley and for Bexleyheath and Crayford. It sounds that I may also have the support of the hon. Member for East Wiltshire, which also makes me very happy at this stage of the evening!

I tabled these amendments because I passionately believe in inclusive healthcare for disabled people, removing barriers to such healthcare where possible, and ensuring that disabled people have a strong voice in advocating for themselves and the healthcare they need or desire. I have tried to write the amendment and the new clause to ensure that access to an independent advocate operates across the functions of the Bill. I have been keen to ensure that this provision acts in conjunction with new clause 27, which I will speak about at a later stage. I hope, as I said in an earlier response to the hon. Member for East Wiltshire, that that will provide a solid and robust opportunity to monitor the impact on disabled people of the Bill, if it does pass through Parliament, through its implementation and in practice. Taken together, the measures will create a solid foundation to enable disabled people to have a voice and will provide a strong structure for accountability in the Bill.

I acknowledge the Minister’s comments, and will work with him and my hon. Friend the Member for Spen Valley to ensure that it is watertight.

Amendment 517 agreed to.

Amendment made: 534, in clause 30, page 18, line 30, at end insert—

“(da) the forms of proof of identity that are acceptable for the purposes of section 6.”—(Jack Abbott.)

Amendment made: 523, in clause 30, page 18, line 31, leave out paragraph (e) and insert—

“(1A) The Secretary of State may issue one or more codes of codes of practice in connection with any matters relating to the operation of this Act not required under subsection (1) as the Secretary of State considers appropriate.”—(Danny Kruger.)

This amendment, which works together with Amendment 447, would clarify that the Secretary of State is not required to issue a code of practice under subsection (1)(e) but instead has the discretionary power to issue further codes of practice as the Secretary of State considers appropriate.

Amendment made: 417, in clause 30, page 18, line 32, at end insert—

“(1A) The Secretary of State must, within six months of the passing of this Act, issue one or more codes of practice in connection with the arrangements for ensuring effective communication in connection with the provision of assistance to persons in accordance with this Act, including the use of interpreters.”—(Jack Abbott.)

This amendment is linked to Amendment 416.

Amendments made: 216, in clause 30, page 18, line 37, leave out subsection (4).

See the statement for Amendment 188.

Amendment 217, in clause 30, page 18, line 38, leave out “that procedure” and insert “section 39”.—(Kim Leadbeater.)

See the statement for Amendment 188.

[Danny Kruger]

On a point of order, Mrs Harris. Before I move the next amendment, I wish to correct the record. I do not know if this is the moment to do so, but I wish to correct a mistake I made earlier today.