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

Liz Saville Roberts Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Q There was one thing I wanted to ask about, but it led me to another question, which is to Dr Naomi Richards. It seems that much of what we are discussing assumes that being patient-centric is intrinsic and runs day to day through medical culture. Is that actually the case in your experience? If not, is there something within the culture that needs to change to become more patient-centric in order to enable autonomy?

Dr Richards: I think you probably know the answer is that it is not patient-centric. In Marie Curie’s “Better End of Life Report 2024”, which was a representational survey with bereaved relatives, a third of people did not think that their relative even knew that they were dying. We still have a long way to go in communicating to people that they are in a terminal phase, so that they can find whatever residual value is in that period of time for themselves and their family. So, no, definitely not, but that is what we are striving for. I am sure that that is what all healthcare professionals are striving for.

In terms of assisted dying, it would be so explicit. It is categorically different from other kinds of conversations that are much more open-ended, like goals of care conversations at end of life. This is really quite specific, to the extent that you can actually give doctors a form of words to use, because their request for this procedure needs to be so categorical and there needs to be no ambiguity around that.

In a way, this conversation about assisted dying is actually different because it is very up front, it has to be very categorical and it has to be documented. In that sense, it is extremely patient-centric, and there would be no using euphemisms, which happens in end-of-life care, when what doctors think they have told their patients they do not hear. They have heard something else, because euphemisms change according to—well, you do not even have to go so far as to talk about different communities or cultural groups; they change from one person to another. I think this would require quite specific language. It would bring things into a much less ambiguous kind of territory.

[Juliet Campbell (Broxtowe) (Lab)]

Q My question is to Professor Preston. I will go back to something you said in your last answer, when we talked about how people are treated, and the differences and inequalities across society but also within our healthcare systems and how things are done. This was highlighted specifically during the pandemic. How do you think these inequalities will undermine the principles of the Bill?

Professor Preston: I think it is about having that additional consideration. When additional consideration for, perhaps, social deprivation or about people from minority groups is in the training and is at the forefront of people’s thinking, they can address it.

I will give you an example. We did a study looking at access to palliative care. I know you have heard a lot about there being a postcode lottery and things like that. One of our areas is one of the most deprived coastal communities in the country, and yet it had equal access for people across all areas of society, because they brought in people to target anyone from those socially deprived areas.

Equally, at the beginning of the first wave of the pandemic, at one of the big London hospitals, we analysed the data because we were concerned about access to palliative care services. Were people accessing it during the pandemic? We also looked by ethnicity. What we found was that not only during the pandemic, but pre-pandemic, if you were non-white, it took—I don’t know—three or five days longer to get that referral.

We had an idea that from some of the research we had done on social deprivation, people are making assumptions. It is not about people making horrible decisions, but they are making assumptions: “Oh, they will have a big family—the family will look after them. This will happen or that will happen.”

The nurse consultant, Claude Chidiac, went in and did training for the staff and said, “Don’t assume that just because people come from an Afro-Caribbean family that they have got this big family.” Within a year, when the second wave happened, the difference had gone. It can be at the forefront of training and you can make people really think about it. I would say—I think someone said it yesterday—that there is almost an inverse inequality, because I think those families and those communities will be really trying to protect people from even thinking about going for it.

--- Later in debate ---

[The Chair]

Thank you. Liz Saville Roberts, Danny Kruger has kindly forfeited a question in order for you to have two, so I will call you first.

[Liz Saville Roberts]

Q Thank you very much to Mr Kruger, and to you, Chair.

Professor Lewis, I am glad to say that the Committee appreciates that scrutiny is necessary for Wales-related aspects of this private Member’s Bill. What are the risks of insufficient scrutiny?

Professor Lewis: Because this is a private Member’s Bill, it will not have gone through the process, which a Government Bill would have done, of having discussion between Governments as to how this might be sorted out. That impacts on Wales. So it is really important to have a session that focuses, albeit briefly, on Wales. I am grateful to the Committee.

This is an England and Wales Bill because certain criminal offences are matters on which the Senedd in Cardiff cannot legislate, and that includes offences that relate to suicide. However, apart from that, the impact of the Bill on devolved matters, if it became law, would be substantial—on the health service in Wales, on social services in Wales and on Welsh society generally. It is important that you take account of that. Indeed, certain aspects of the Bill seem to me to require a legislative consent motion to respect the Sewel convention.

[Liz Saville Roberts]

Q Could you expand somewhat on which aspects those are?

Professor Lewis: As I am sure you are aware, the Parliament here in London can legislate about anything at all—absolutely anything. However, where the power to legislate is given to the devolved legislatures, the Sewel convention states—in the Government of Wales Act, in section 176, I think—that the Parliament in London will

“not normally legislate with regard to devolved matters”.

That is what is said. Therefore, there are certain aspects of this Bill—I will give you brief detail on that—that, in my opinion, relate to devolved matters. The first is clause 32. This is a very broad clause that would give the Secretary of State very broad powers for the implementation of the Bill within the NHS, including within the NHS in Wales. It seems to me unarguable that that is a matter both on which the Welsh Government ought to be consulted and which would require legislative consent from the Senedd.

The second is a cluster of clauses that impose specific functions on Welsh Ministers and on the chief medical officer for Wales. They are clauses 31, 33 and 34. Once more, from a formal perspective, they seem to require a legislative consent motion, so it seems to me that some thought needs to be given as to how that might happen in the context of a private Member’s Bill.

[Sarah Green]

Q To follow up on what you just said about legislative consent, in October of last year, the Senedd voted against Julie Morgan’s assisted dying motion. In your opinion, what implications does that have for the Bill and its progress?

Professor Lewis: A motion was put forward by Julie Morgan that was supported by three or four Members of the Senedd, which was broadly in support not of this specific Bill, but of the purpose of this Bill, and it was defeated, as you say, after a full debate on the Floor of the Senedd. Formally, legally and constitutionally, that is of no consequence, because it was not a legislative consent motion, and of course, as I said earlier, this Parliament is able to do what it likes. It could totally disregard that. Whether that would be a prudent or an appropriate thing to do, or even what one might describe as a constitutionally appropriate thing to do, is another matter.

I think it reinforces the point that there is a significance in making sure that scrutiny of the Bill has a Welsh focus. You might consider, for example, making different provision in Wales. How do you respect what was a democratic vote in the Senedd in Cardiff? Well, you might consider having different commencement provisions—I am not advocating this, it is just an example of what you might do. Commencement of the Bill in Wales might happen in a different way, on the assumption it was passed. You might put that in the hands of Welsh Ministers and the Senedd, just as an example.