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

Debate between Juliet Campbell and Liz Saville Roberts

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.

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

Debate between Juliet Campbell and Liz Saville Roberts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Juliet Campbell (Broxtowe) (Lab)]

Q My question is for Professor Shakespeare and Dr Griffiths. Clause 4 of the Bill offers the opportunity for clinicians to instigate the discussion on assisted dying. Could you both tell me your view on that, please?

Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious. As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act.

Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live. That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed.

It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes. Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion.

We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made.

Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice. They need access to advice, and that means legal aid. I point in that paragraph to the provision of non-means-tested legal aid, just like in the case of parents of children and the withdrawal of life-sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.

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

Q I have a question for Mr Amin. England and Wales is a single jurisdiction, but health is devolved and we have been discussing an amendment to clause 12 in relation to the court of a multidisciplinary arrangement, as opposed to the High Court. What are the implications for the Committee to understand in how this plays out, with health being devolved but the jurisdiction being single?

Yogi Amin: If the legal panel is not a High Court judge, but it is a multidisciplinary panel, then it just draws upon the people in the local areas. The Court of Protection operates in England and Wales and the judges apply the law the same way. That is what the panel would do in this case. Are you more concerned about the make-up of the panel or how they apply it?