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

Rebecca Paul Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Kim Leadbeater]

Q To that point, in those conversations where patients are making very serious decisions, it is not uncommon that you would seek additional advice from other professions, such as a psychiatrist or possibly a social worker and other professionals, if you felt there was a need to do so.

Professor Whitty: The further you go up in the seriousness of the decision, the more you would do that. For example, if you were setting a finger that had been broken, you are not going to wait until a psychiatrist has said that you can do that. Within reason, provided that someone gives consent, you will do that. You will be much more cautious about moving forward with things like open heart surgery or deprivation of liberty if you think there is uncertainty. It should be clear. For the majority of people, it is very clear they have capacity or very clear they do not. There is a relatively small—but important—number in the middle where that is less clear and where additional views are relevant, particularly where there is a question of co-existing mental health issues. The fact of the mental health condition does not in itself mean that someone does not have capacity, but what has to be taken into account is, “Do they have the capacity for this decision at this point in time?” That is how the Mental Capacity Act works.

[Rebecca Paul (Reigate) (Con)]

Q The Bill sets out that it should be brought into force within two years. If the intention is to provide assisted dying through the NHS, can the NHS be ready in time to deliver the service equitably and safely? What needs to be deprioritised in order for it do to so?

Professor Whitty: As we have seen in covid, the NHS, like any service, can swing very fast if there is a need for speed. In this case, I think most people in society would say that the key thing is to get this right. Personally, I would rather it was not running against a timeline. You would not want it to drag on forever, because then you have uncertainty for everybody, but I think Duncan and I would both say that two years seems a reasonable starting point. With some things, it might take longer than that to work out how we are going to provide this in the most safe and equitable way—for example, in dealing with minority and other groups. We need to get all that right and, at least at first pass, get it as close to good as we possibly can.

Equally, we may find when we first start using the legislation that there are some things that we had not considered at the beginning, and therefore we need to go back and improve on them because we just had not thought about them in the first way through the gates; that is why I hope that some of the more operational issues are done through secondary legislation and regulation. Inevitably, that is true for many bits of legislation, but it is particularly important here.

I go back to my very first comment: the central person here is an average citizen in their last six months of life. What we do not want is a system very difficult for them to navigate so that they spend their entire last six months of life—if the Bill is passed and they choose to take account of it; they are going to be a minority—stuck in a bureaucratic thicket. We need to keep this simple. My view is that the best safeguards are simple safeguards. Overcomplicating usually makes the safeguard less certain.

[Rebecca Paul]

Q What is a reasonable timeframe, in your view? I appreciate that that is a bit like asking, “How long is a piece of string?” What would you ideally like to see?

Professor Whitty: I think that there is a big difference between the Act coming into initial force—that is, “This is now where the law is”—and the service being provided. On the second of those, I would argue against putting a firm deadline, with a reasonable expectation that the NHS and others should be involved in trying to make plans for this as fast as possible. But if the Bill is passed, we are going to have to sort out multiple different things to get this to work. If we were three months away from being able to get something sorted out, I would not want to have a situation where it all had to start the following day. I think that would make it much harder to provide a safe, fair and secure service.

Duncan Burton: In my understanding, the Bill does not call out the NHS specifically in terms of providing this service. A number of steps would have to be gone through to understand the implications—the operational and training implications, as we have already discussed—to understand the timeline required. For the reasons Chris has outlined and as mentioned earlier, when thinking about the wider implications for the workforce there would need to be sufficient time to be able to work through those.

[Rebecca Paul]

Q Would it be fair to say that you would need to know fairly quickly whether or not it would be provided through the NHS for planning purposes?

Professor Whitty: That is a key question, and to me that does seem something that Parliament may want to debate. That is not a question for us, but it is a point of principle one way or the other.

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

Q I have a question for Chris Whitty. You said you are here representing the chief medical officer for Wales as well. Health has been devolved for over 25 years, of course. What conversations have you had with the chief medical officer for Wales about the differences in how the NHS operates between Wales and England? What are the implications the Bill Committee should know about?

Professor Whitty: First, I have had quite a lot of conversations—not just with the chief medical officer for Wales, but all the other chief medical officers and indeed a much wider range of the medical profession; I wanted to feel that I was giving a central view of the medical profession in terms of the practicalities. My view is that, in a sense, the principles of the Bill are no different between England, Scotland, Wales and Northern Ireland, although the legislation would apply only to England and Wales were it to be passed.

The operational questions we have been talking about will be either subtly or importantly different between the different jurisdictions for a variety of different reasons. I do not think that is a problem, provided it is in secondary legislation and it allows the different jurisdictions to do things in the way that best suits their own set-up. Again, as we saw during covid, different nations will choose to reach the same end state using slightly different practical routes.

--- Later in debate ---

[The Chair]

We will now hear oral evidence from Glyn Berry, via Zoom—hello and welcome—and from Professor Nicola Ranger. We have until 11.25 am. Will the witnesses please introduce themselves?

Glyn Berry: Good morning. My name is Glyn Berry. I am a palliative care social worker and a lead allied health professional. I am co-chair of the Association of Palliative Care Social Workers.

Professor Ranger: I am Professor Nicola Ranger, chief exec and general secretary of the Royal College of Nursing. Previously, I was a chief nurse in acute hospitals for 10 years.

[Rebecca Paul]

Q This is a question for Glyn Berry. A statement that you published in November 2024 says:

“There is a risk that without a more sustainable model of funding for palliative care, many people will choose an assisted death, as the only way to escape from unbearable suffering.”

Can you elaborate on why you say that?

Glyn Berry: Yes. As experienced social workers, working within the realms of a society that is quite often split into “have” and “not have”, we already see the despair and the difficulties that people encounter with inequitable care in palliative care services. We know that a lot of services are delivered by charities as well as statutory agencies and the trusts, and we know that the funding for palliative and end-of-life care is a real issue and has been heading that way for some years.

We would hate to see what has been happening in other countries in which assisted dying is already in place, where people feel that they have no option other than to apply for assisted dying, because they do not know what else might be out there for them. That is the role of a social worker when we work with our patients: we look at the bigger picture, not just at what is happening clinically. Obviously we depend hugely on our clinical colleagues and expertise, but our specialism, if you like, is to look at what else is out there for a patient—and for their family and friends, because they are as much a part of the patient’s journey as the patient themselves.

We also know that palliative and end-of-life care is hit and miss in terms of what people can access. Marie Curie reporting in 2024 showed that there are massive disparities in terms of better care for people at end of life or with a palliative condition, and they have a significant effect. What we say to people is that we will help them to live as long as they can as well as they can in palliative and end-of-life care situations, but that is really difficult when the resources are not there and things become a huge priority.

[Rebecca Paul]

Q What would a more sustainable model of funding for palliative care look like?

[The Chair]

Order. We are going slightly off topic, so could we have a brief answer?

Glyn Berry: It would be something that is equitable for everybody. At this moment in time, it is not. As I say, some people get it and some people do not. A sustainable model would give fair access to everybody.