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

Daniel Francis Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

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

It is a pleasure to serve under your chairship, Mrs Harris. I was also not intending to speak, but I think there are two slightly different issues here. Prior to Second Reading, the Equality and Human Rights Commission produced a briefing paper on some of the issues that have been covered in amendment 500. It also gave oral evidence where it was not happy about some aspects of the Bill and about not having the equality impact assessment.

I hear what my hon. Friend the Member for Sunderland Central says, but the briefing that the EHRC produced—although I appreciate what the Equality Act says—did not talk about sexuality, for instance, but it did talk about many of the aspects that are in the amendment of the hon. Member for Richmond Park. In the oral evidence, Dan Scorer from Mencap particularly talked about the experience in covid—for example, someone was five times more likely to have a do not resuscitate order placed on them if they have a learning disability. There is wide evidence of that, as Members, and me in particular, were well aware before we heard that oral evidence.

As a councillor, I remember the experience of ethnic minority communities during that period. I used to represent a council ward with a high west African population. There were clear cultural issues around people’s experiences with the health service during that period, and whether they wanted to take up the vaccine. As the then leader of the opposition on my council, I had regular meetings about the different levels of uptake of health services among different communities.

Beyond new clause 8, tabled by my hon. Friend the Member for Spen Valley, which would require the Secretary of State to engage with the Equality and Human Rights Commission, there is a valuable reason for seeking to have that data and for ensuring that the assisted dying commissioner has that data. As I will talk about in debates on subsequent groupings, Dan Scorer from Mencap clearly asked about what happens if things go wrong for people with certain protected characteristics, and at what stage we will review that.

Some of us have legitimate concerns about the characteristics in the amendment tabled by hon. Member for Richmond Park, and about coercion, particularly of women. People have listened long and hard about where I am coming from on this issue, and unlike some other Committee members, I am not opposed to assisted dying per se. I have come to the position, however, that it is vital to try to capture the data on people with learning disabilities or for whom there is a judgment about their level of mental capacity, and that should be in the Bill. I therefore support the amendment.

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

It is a pleasure to serve under your chairmanship, Mrs Harris. I was not planning to speak on this group either, but the debate speaks to a number of the things that we have talked about in the past few weeks. I add the caveat that all hon. Members present acknowledge that the promoter of the Bill, my hon. Friend the Member for Spen Valley, has repeatedly made it clear that data collection is essential to what we are proposing. I am also sympathetic to what my hon. Friend the Member for Sunderland Central said about not necessarily needing to put everything in the Bill.

Without trying to sound like a broken record, however—I have made this point several times over the past few weeks—it is critical that in certain situations, although there may be some regulations or inferences that exist that may lead to certain outcomes that we on this Committee would all like to see, there is nothing necessarily wrong with putting them explicitly in writing.

Hon. Members have used different stats from different jurisdictions in their own way to lend weight to their arguments, and although many of those stats are relatively consistent in a number of areas, they are not necessarily decisive. I cited a stat yesterday when speaking to an amendment that around 10% of people using the assisted dying route have complications during the final stages, but as I said then, that came from an incredibly small sample size of just over 100 people.

It is therefore critical that, if the Bill is passed and we go down this path, we pursue robust and expansive data gathering in a number of different areas, and I am sure that any Government would look to do so. As long as it does not create any loopholes or unintended consequences, that sort of evidence gathering should be in the Bill because, at the very least, that would provide reassurance that it will happen if the Bill is passed.

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[Naz Shah]

Perfect. I thank my hon. Friend—I like it when we get to amendments that are supported.

Amendment 447 would literally change the word “may” to “must” in clause 30. The first four matters that the clause lists are so important that issuing codes of practice cannot be left just as a choice for the Secretary of State; it must be something that the Secretary of State has to do. It is worth pointing out, as I am learning about this new process, that when we leave it to the Secretary of State, that means a Secretary of State under any Government, depending on how long it takes. It is not necessarily just our Government; it could be another Government. I am just pointing that out, because somebody pointed it out very clearly to me, and I was shocked by that detail.

The Bill sets out five areas of responsibility that the codes could cover. They include some of the most consequential matters that this Committee is considering, as set out in clause 30. The first four are doctor’s assessments of

“whether a person has a clear and settled intention to end their own life,”

and whether that person has capacity to do so, accounting for the effect of depression and other mental disorders on decision making; the

“treatment or palliative, hospice or other care available to the person”;

the provisions for effectively communicating with them; and

“the arrangements for providing approved substances to the person… and the assistance which such a person may be given”.

They are all vital and I am pleased that this amendment would ensure that the Secretary of State has to issue codes of conduct, rather than being able to decide that they may not do so.

If these matters were not covered by codes of practice, they could be left to individual doctors to interpret, which would mean that doctors would face having to make unfamiliar and complex decisions without the clear guidance that a code of practice would give. That could have created—indeed, it would have created—dangers for both doctors and for people seeking assisted dying.

The fifth area of responsibility for the Secretary of State, as set out in clause 30, is codes of practice on:

“such other matters relating to the operation of this Act as the Secretary of State considers appropriate.”

It seems clear to me that, because the Secretary of State will issue codes of practice for the first four areas of responsibility, they must also issue codes for other matters if they see a need for them. I am confident that we all agree on that.

Amendment 523 would make it clear that the Secretary of State can issue codes of practice on any other matters as they see appropriate, but they would not have to do so if they thought there were no other matters that needed such codes. That is a sensible clarification that preserves what the Bill drafters were doing when they wrote the clause. If the Bill passes, we will be authorising doctors to depart from centuries of previous practice. They will face decisions that they have not previously had to take. I am pleased that, if the Bill passes, the Government will be able to set out the clearest possible guidelines for medical professionals in accordance with the many provisions in this clause.

Doctors in England and Wales have never previously had to assess whether someone has a clear and settled intention, and it is surely unfair to ask them to work out how to make that judgment without clear guidance from a code of practice. A code of practice also mitigates the risk that different doctors will approach this task in widely differing ways. The truth is that the use of the Mental Capacity Act 2005 is untested in relation to assisted death, where a person will take lethal drugs to end their life.

Codes of practice will address important and difficult questions of interpretation. Again, that will give us much-needed clarity, including in the area of the provision of palliative care to people considering assisted dying and how doctors advise them. The independent commission on palliative and end of life care found that knowledge of palliative care among doctors is often limited, so the Secretary of State’s intervention will be much appreciated, and the codes will give a settled direction.

I am grateful that my hon. Friend the Member for Spen Valley has accepted amendment 447. I look forward to working through the rest of the Bill and getting some more amendments passed.

[Daniel Francis]

I will speak to amendment 394 in my name, which provides that codes of practice may be issued on

“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”.

I am aware that my hon. Friend the Member for Spen Valley may speak to amendment 517 and new clause 25, which we will discuss shortly.

I tabled a number of amendments, one of which was accepted, following conversations with Mencap. Dan Scorer from Mencap gave us oral evidence on advocacy support, the discussions and the role of families and said:

“Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate—that would probably be our preference—who is specifically trained to support people with a learning disability who are considering their end-of-life options.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q355.]

I will not go on at great length—hon. Members have heard my views on support for people with learning disabilities, and I am conscious that we will come to other amendments on this issue—but I will move my amendment when we get to the relevant stage, in a manner consistent with the approach that I have taken in Committee so far.

[Jack Abbott]

I realise that we could be called away to vote at any moment, but I rise to speak to amendment 534. It is relatively small, and I appreciate that what it seeks may already be covered by regulations, but it would ensure that it is also put in a code of practice.

Anybody seeking an assisted death under the Bill who meets the eligibility criteria should be able to access it. However, there is a risk that the requirement that patients provide two forms of proof of identification could present challenges for certain groups, causing inequalities of access—[Interruption.]

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Read in conjunction with amendment 394, in the name of my hon. Friend the Member for Bexleyheath and Crayford, amendment 517 and new clause 25 are a vehicle for integrating into this Bill the use of the NHS accessible information standard, about rights to information and support for disabled patients, for qualifying people. That would address one of the other important requests that Mencap raised in its evidence. For those reasons, I commend the new clause and amendment to the Committee.

[Daniel Francis]

We are in danger of having much consensus this evening. As hon. Members know, this issue is very close to my heart, and my hon. Friend the Member for Penistone and Stocksbridge knows more than anybody that inequality for disabled people in this country remains ingrained. As the parent of someone with a very complex set of disabilities, including a learning disability, I have seen that at first hand.

I welcome new clause 25 and amendment 517, in the name of my hon. Friend. My concern with the Bill is that we must protect vulnerable people, particularly those with learning disabilities, and the amendment and new clause would address some of my concerns by providing an independent advocate, as Mencap asked for, in circumstances that the Secretary of State would specify. I welcome the fact that, as my hon. Friend said, the amendment and new clause join my amendment 394 in making that happen. The proposal includes people who have substantial difficulty in understanding the process or the information involved, or in communicating. I note that the specified conditions could include a wide range of people, and I thank my hon. Friend for including them.

In due course, we will see what circumstances are dealt with in regulation. There are two issues that I have raised throughout this debate, and they remain a tension. One is that we must support people with learning disabilities and the other is capacity. We need to be very clear about that in the training, and I trust that that will be dealt with in due course. Advocates must not be seen as leading people into decision making, as they could be under the Mental Capacity Act 2005, which gives them that scope. We need to be clear in the training that they have to assist the person in making their decision. I will be supporting these proposals, because I am confident that we can overcome that in the training.

In her written evidence, Patricia Cook talked about decision making for her daughter who has Down’s syndrome. She wrote:

“My daughter has the mental capacity to make decisions about her daily routine, social, educational, and family matters, but she lacks the capacity to manage other aspects of her life such as her financial affairs and healthcare.”

She went on:

“My daughter is much more likely to defer to a clinician’s proposal as she might think that she ought to agree.”

We heard that important point again in oral evidence. I would hope that the advocate would be in a position to provide support and advocacy to a person having to make that decision.

[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.

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Guidance from Chief Medical Officers

[Daniel Francis]

I beg to move amendment 395, in clause 31, page 19, line 8, at end insert—

“(2A) The persons consulted under subsection (2) must include persons with learning disabilities.”.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 396, in clause 31, page 19, line 14, at end insert—

“(ba) persons with learning disabilities;”.

Clause stand part.

[Daniel Francis]

These amendments refer to the oral evidence we received from Mencap. They would add provisions to ensure those consulted in the preparation of the chief medical officer’s guidance include persons with learning disabilities. I commend the amendments to the Committee.

[Stephen Kinnock]

Clause 31(2) provides that, before preparing guidance under the clause, the relevant CMO must consult such persons as they consider appropriate. Amendment 395 would add a duty for the CMO to consult persons with learning disabilities before preparing such guidance. That may call into question why other specific groups are not expressly listed.

Amendment 396 would include persons with learning disabilities as an additional category of people to which the CMOs must have regard in relation to preparing practical and accessible information, advice and guidance under clause 31. The effect would be to include persons with learning disabilities as a specific category of people in addition to the listed categories. This could imply that those with learning disabilities would not already be included in one of the categories already listed, namely

“persons requesting or considering requesting assistance to end their own lives…next of kin and families of such persons”

and “the general public.”

Clause 31 sets out a duty on the chief medical officers for England and Wales to publish public-facing guidance relating to the operation of the legislation. It has rightly been a matter for the Committee to determine amendments to the clause, and the Government will respect the will of Parliament. As Members will know, the Government have been working with the Bill’s promoter, my hon. Friend the Member for Spen Valley, on amendments to ensure that, if passed, the legislation will be legally robust and workable.

On this clause, we intend to support the development of further such technical amendments on Report. Where amendments are required to clarify the obligations in relation to the preparation of guidance, we will work with the promoter to ensure that MPs receive good notice to give them adequate time for consideration. I hope those observations were helpful for the Committee.