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

Daniel Francis Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Rebecca Paul (Reigate) (Con)]

I rise to speak briefly to amendments 413 and 414, which are very thoughtful and well-considered amendments. I thank the right hon. Member for Dwyfor Meirionnydd for setting out powerfully and persuasively the importance of the subject. I support the amendments, but in reality we probably need to go further by specifying exactly who would be interpreting and making sure that it is regulated reliably. We do not want just anyone coming in off the street and doing that. That would not be appropriate, so we need to think about whether we need to go further. However, the amendments are a great starting point and would move us closer to where we need to be.

There is much subtlety in this debate. We talked a little in the first week of this Committee about the importance of language and the words that are used. We always need to be cognisant that when we are imparting information to people, particularly in a healthcare context, it is vital that we use language that people understand so that the ramifications of what is being discussed are clear. That is where these amendments become really important, because for those for whom English is not their first language, some of the subtlety and nuance around what a term means could be lost. Interpreters could be an important part of adding the clarity required to ensure that everyone going through the process understands exactly what it involves.

A 2024 Nuffield Council on Bioethics survey found that 39% of people think that assisted dying means withdrawing life support, 19% think that it means providing people who are dying with drugs that relieve symptoms of pain or suffering, and 13% think that it means providing hospice care. That echoes our debate a couple of weeks ago about how assisted dying can be interpreted in quite a few different ways. It is really important that we are clear in the language we use and what we mean by it.

We also find that among ethnic minorities there is sometimes a greater misunderstanding about palliative care. A 2024 King’s College London survey found that 6% of people believe that it is accurate that palliative care involves giving people medicines in order to shorten their life, but 18% of ethnic minority groups think that. We need to be cognisant of that. While 18% of people trust healthcare providers “not very much” or “not at all” to provide high-quality care towards the end of life, that figure increases to 30% for ethnic minority groups. While 6% of people say they have not heard of palliative care, that increases to 22% of people in ethnic minority groups.

It is important to recognise that the text of the amendment is much less stringent than that of section 7 of South Australia’s Voluntary Assisted Dying Act 2021, which strictly regulates interpreters. That goes back to my initial point. Under the South Australian law, they must be

“accredited by a prescribed body”.

They cannot be a family member, cannot stand to benefit from the will and cannot be involved in the patient’s healthcare. It is really important to ensure that a recognised professional is involved in this most important of processes and information sharing.

I support the amendments, although I think they need to go a little further. I look forward to hearing what other hon. Members have to say.

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

I echo the points that have been made about the importance of the initial conversations, particularly for those who do not have English as their first language. I made a commitment to my hon. Friend the Member for Ipswich that in his absence I would press amendments 414 and 415 to a Division, as he requested.

I support the general principles of the amendments relating to those who are seeking or who need interpretation to explain aspects of assisted dying to them. I support the merit of that principle and the intention behind amendments 414 and 415.

[Naz Shah (Bradford West) (Lab)]

Like the right hon. Member for Dwyfor Meirionnydd and the hon. Member for Reigate, I will not press the amendments to a vote, but I certainly want to speak to them. I do not think that they go far enough. Let us put ourselves in the position of people of colour: if the English language is seen as superior to or more powerful than Welsh, that means an extra layer of intervention that I do not think the amendments quite capture. We have not even talked about British Sign Language in our discussion of languages, but it is also really important.

I am a qualified interpreter from Urdu to English—in health, funnily enough—and I can tell the Committee that in Urdu there is not even a word for depression. The word for depression does not exist. In a previous life I chaired the largest mental health charity outside London for ethnic minority communities, and I am a former NHS commissioner, so when we talk about health inequalities and patient intervention, I understand acutely the nuances involved in translating from one language to another.

In the first instance, there is a language that someone does not understand. In the second instance, particularly for minority communities who speak languages from the south Asian subcontinent such as Punjabi, Urdu or Hindi, the words do not exist to translate the Bill literally or to talk about assisted death. That speaks to the point that the hon. Member for Reigate made about understanding what it means. I have the same stats that she cited, which show that people do not understand what assisted death is.

I would really value a response from the Minister and from my hon. Friend the Member for Spen Valley to these questions about the nuances of having such a difficult conversation. These are really brave conversations, both on the doctor’s side and on the patient’s. Take a woman from an ethnic minority background whose first language is not English and whose doctor is unable to translate their conversation with her. Would that conversation be disempowering? Would it be empowering? Would we be doing a disservice to that person, with the best will in the world from the doctor? I really would like to understand what consideration is being given to making this accessible, if it is to be a service and a piece of legislation that is open equally to all.

I have mentioned this point a few times and have raised it with the Minister, and I appreciate that the Minister has responded, but this is where my frustration—for want of a better word—comes from about not having an impact assessment in the first place. If we had had an impact assessment, the Government would have looked at these things. Even with small Bills, we go out to consultation for weeks and weeks. With this Bill, we have not spoken to anybody during Committee stage about the nuances of the provisions on languages and what they will mean for patients. Although I support the essence of what the amendments are attempting to achieve, they fall short of providing the necessary protections. I do not know how the Government will address that.

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[Lewis Atkinson]

I do not disagree with my hon. Friend. I gently say that the GMC guidance specifically references that Act, so that is what I was referring to.

I am pleased to see amendment 341, which I believe would bring the legislation into line with that GMC guidance, ensuring that removing the duty to refer would absolutely not be a licence for people to be left without access to care. The GMC is very clear, as the hon. Member for Reigate said, that people must be given sufficient information and be empowered to seek the options and information that they need. Therefore, I am pleased to support the amendment.

[Daniel Francis]

It is a pleasure to serve under your chairmanship, Mr Dowd. I note that my hon. Friend the Member for Spen Valley has said that she is minded to accept amendment 341. I will, however, still briefly speak to amendment 338 and new clause 13, which stand in my name.

The British Medical Association has said that it strongly urges MPs to support the amendments, which would remove the referral requirement in relation to preliminary discussions and establish an official body to provide factual information to patients about the range of options available to them. As the hon. Member for East Wiltshire mentioned, Dr Green, in his oral evidence, said:

“The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q37.]

He went on to say:

“I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q40.]

He also said:

“The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]

The BMA’s position is that the proposal is analogous to doctors’ professional legal obligations regarding abortion, and consistent with the Bill’s inclusion in clause 23 of a right to refuse, for any reason, to carry out activities directly related to assisted dying. It has said:

“In tandem, we believe creating an official body to provide individual information and advice to patients, to which doctors could direct (rather than refer) patients, would ensure that the doctor’s views are respected, whilst also—crucially—ensuring that patients can easily access the information and support they need. Currently, whilst the Bill acknowledges the need for accurate, impartial information and advice for patients, it gives no indication of how this might be delivered—generic published information would not be sufficient. Patients would need individual advice, guidance, and support so that they can make informed decisions, and an independent information service could meet this need.”

As the hon. Member for Reigate mentioned, a member of the Royal College of General Practitioners also said:

“The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 279, Q365.]

He went on to say:

“Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q354.]

Therefore, I commend amendment 338 and new clause 13 to the Committee.

[Naz Shah]

It is a pleasure to follow my hon. Friend the Member for Bexleyheath and Crayford. I rise to speak to amendment 287, tabled by my hon. Friend the Member for York Central. Clause 4(5) currently says:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner whom the first practitioner believes is willing and able to conduct that discussion.”

If this amendment was to be adopted, it would read:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner who is qualified to undertake such a preliminary discussion, and set out palliative medicine options to provide the patient with appropriate end of life care, including referring them to a palliative medicine expert.”

Put simply, the amendment would mean that if a doctor met with a patient with a severe illness who might die within six months, but the doctor was themselves unwilling to have an initial discussion on assisted dying, they would still have to refer the patient on to a doctor who was willing to have that discussion. The patient’s decision to explore assisted dying would not be obstructed; the main change would be that that doctor would now have to discuss palliative care options with the patient. That is surely a measure that would increase the patient’s welfare.

Let us think about the kind of patient who can apply for assisted dying. They must have a diagnosis of a serious illness and a prognosis that they are likely to die within six months. The Bill’s supporters have said many times that they are worried about any changes that will reduce the autonomy of people seeking assisted death. This amendment quite obviously does not in any way reduce people’s autonomy, nor does it in any way place an unreasonable burden upon doctors. If a patient has a diagnosis of a serious illness, and if they have themselves asked for a conversation on assisted dying, then it surely must be good practice for that doctor to discuss palliative care options.

It is also only good practice that one of those options would be for the doctor, if the patient wishes, to refer the patient to a palliative medicine specialist who is more able to talk about such options. That means that the amendment would not place any undue burden on either the doctor or the patient. The doctor ought to be offering such advice on palliative care. The patient may or may not decide to take the doctor’s advice on palliative care, but they have had it, and the patient may well benefit from having had advice on palliative care.

Given the conversations we had this morning, I can foretell one objection to this amendment: that since good doctors will do this anyway, it is unnecessary to have a provision on the face of the Bill to ensure it. This seems to me a very weak objection. Let us be honest, the doctors that we have in this country are of extremely high quality. They are dedicated, skilled and compassionate men and women. We are lucky to have them, but we cannot say that every doctor participating in all the processes that they currently undertake always follow best practice.

Similarly, we simply cannot say that in any assisted dying process doctors will always automatically follow best practice. People make mistakes. That includes people who are highly trained and extremely compassionate. I would be astonished if we could find a doctor who said they had always got everything right. As lawmakers, we have to guard against the fact that even some of our most admired professionals can and sometimes will make mistakes. One way that we will guard against that is to set out duties that they have to follow. This amendment does just that.

I hope that we will not hear the objection that we have heard to a great many good amendments: that it will somehow make the Bill more dangerous by adding complications. The amendment simply adds a small step, by placing a duty on a doctor to give palliative care advice to a patient with a diagnosis of serious illness. Surely the Bill cannot be so lacking in robustness that such a small change would make it dangerous.

In summary, the amendment is a sensible change. It would in no way block the ability of adults who meet the conditions set out by this Bill to explore assisted dying, nor would it place any burden at all upon doctors. It would simply place upon them a duty to follow what we can all surely agree is best practice, and it would greatly improve the early access to palliative care advice for patients with a diagnosis of serious illness. That would improve those patients’ chances of receiving good palliative care. I therefore urge hon. Members to support the amendment.

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[The Chair]

For Members’ benefit, as we are coming towards the end of the debate, let me say that I want people to be able to express their opinions as widely as possible, but it is also my responsibility as the Chair to ensure that that is contained within the parameters of our rules of debate.

[Daniel Francis]

Thank you for letting me speak, Mr Dowd. I will be brief.

As we reach the end of our debate on clause 4, I regret some of the decisions that we have made. I welcome the fact that in due course we will discuss amendment 418, in the name of my hon. Friend the Member for Spen Valley, which also relates to the preliminary conversation. My concern remains that it is “a” preliminary conversation, not, in my determination, “the” preliminary conversation. My amendments would have meant that “the” preliminary conversation could not be held before someone is 18. As I read amendment 418, someone could have preliminary conversations before they are 18; it is just that it will be recorded that there was a preliminary conversation after they turned 18. I regret that, as clause 4 now stands, the paperwork and initial discussion must be completed after someone is 18, but that will not necessarily apply to a preliminary conversation.

Equally, I have some regrets in relation to learning disability issues. I welcome the commitment from my hon. Friend the Member for Penistone and Stocksbridge on the amendment that she aims to bring forward, but I am conscious that it is not on the amendment paper for everybody to see. Just as she committed to work with me, I will continue to work with her on bringing it forward.

We have debated clause 4 long and hard, but I do believe that we have a clause that has loopholes in relation to people under 18 and to people with learning disabilities and autism. I will not press it to a Division, but I regret the fact that we have reached this place.

Question put and agreed to.

Clause 4, as amended, accordingly ordered to stand part of the Bill.

Clause 5

Initial request for assistance: first declaration

[Sarah Olney (Richmond Park) (LD)]

I beg to move amendment 271, in clause 5, page 3, line 5, at end insert—

“(1A) A person may not sign a first declaration within six months of being diagnosed with a condition which meets the requirements of section (2)(1)(a) unless they have received a psychosocial intervention in relation to their diagnosis with that condition.

(1B) The Secretary of State may, by regulations, create exceptions to the provisions of subsection (1A).

(1C) Regulations under subsection (1B) are subject to the affirmative procedure.”

This amendment would create a requirement that the person must have received a psychosocial intervention if a terminal diagnosis was received less than six months ago. The Secretary of State would be given a delegated power to create exceptions to such a requirement with regulations subject to the affirmative procedure.