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

Debate between Simon Opher and Daniel Francis

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Dr Opher]

Q Conveniently, my question follows on from that. On our first day of evidence, we had Chris Whitty, the chief medical officer, saying that when you are assessing capacity, the vast majority either clearly have capacity or clearly do not, and there is a small section in the middle. Michael, would you say that a role of a GP would be to inform those definite yeses and definite noes, and then they would perhaps not have the skills for the intermediate ones? I am just suggesting that.

Dr Mulholland: As GPs, we can assess capacity. In this situation, the college’s position would be that we feel the GP should not be part of the assisted dying service, so we would see a standalone service that we can signpost our patients to. The GP role may go on to a different route afterwards, and it may be part of other things with palliative care and looking after the families. We think that some GPs may want to be involved and take that step, but we know from our membership surveys that we have had at least 40% of members in the past who would absolutely not want to have any part in that.

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. We could discuss that these things exist, but we would not be doing that capacity assessment. Obviously, to give patients information about what they are going to, as you know, we would assess their capacity to take that information in, retain it and do the right thing with it for them. We would be doing that level of capacity assessment, but not further on in the process, where you are assessing whether a patient is able to make a final decision. I think Chris Whitty referred to the various levels of capacity. As the decision gets more difficult and complex, you want a greater understanding with the patient that they really know the implications of what is going on, and we just would not be doing that in general practice.

[Daniel Francis]

Q My question is to Dan Scorer. In the Mental Capacity Act 2005, the definition of “capacity” means that many people with a learning disability are presumed to have capacity. We have heard comments from others on the panel, and I am trying to understand whether you feel that the existing provisions in that Act would cover those with a learning disability or whether you would need that greater advocacy, as you discussed, or something different from the Act. Do you have any comments on the fact that family members—lifelong carers, in many cases—would have no requirement, under the Bill or the Act, to be involved in the decision or to comment on their family member’s capacity?

Dan Scorer: The Mental Capacity Act starts from the principle of presuming capacity. The question would be whether, when someone who is terminally ill puts themselves forward for assisted dying, doubts start to emerge about whether they actually have the ability to make that decision in terms of whether they can understand, retain or weigh the information and communicate their intentions.

As I mentioned earlier, our concern is how those discussions around assisted dying are initiated. For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, “What do you think about assisted dying—is that something you might want to consider?” could move them towards or into potentially accepting a course of action that they had never considered before.

That is why I was saying that it is about having advocacy support around that discussion and, as you were saying, about the role of families. 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.

There is a lot that could be done in addition to what is in the Bill already to potentially much better support people who are considering end-of-life options and to have other professionals who could input into multidisciplinary discussions, potentially around capacity assessment.

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

Debate between Simon Opher and Daniel Francis

Committee stage
Tuesday 28th January 2025 Public Bill Committees

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

Q I hear what you have said already regarding capacity. Of course, the Mental Capacity Act relies on the capacity principles. They include the presumption of capacity, the principle that a person cannot be seen as lacking capacity unless all practicable steps have been taken to support them to make a decision, and the principle that a person cannot be seen as lacking capacity merely because the decision is unwise.

I also heard what you said about the scaling of decision making, but within the Bill, in some of those scenarios there is no mandating; the word “may” is used rather than “must”. I want to understand your viewpoint on whether it would provide stronger safeguards if those parts of the Bill were tightened to include “must” rather than “may”, and if the reference to capacity were replaced with a separate definition of “ability”, as proposed in our amendments.

Professor Whitty: I am probably not the best person to ask about the exact drafting of the Bill in terms of “may” and “must”, but I can answer the second part of your question, which is really important.

If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity. It would not be able to do that with just one clause; there would have to be quite a lot of clauses, if I am honest. All systems of this sort are going to be imperfect. The reason why I think it is sensible to base yourself on the Mental Capacity Act is that it is well used and well understood in practice by practitioners every day. Having a system with two completely separate groups of assessment, one of which has never been tested in the courts or used outwith this Bill, would lead to a whole set of potential complications and ambiguities, which are not there at the moment because we have a well-tested mechanism through the Mental Capacity Act.

People should move away from the Mental Capacity Act with some caution, because I think that will cause as many problems as it solves. It is not clear to me what problem people are trying to solve by doing that, given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision. That is the foundation of some of the disquiet that people have had, but it is central to how the Mental Capacity Act works in practice.

[Dr Simon Opher (Stroud) (Lab)]

Q You have already said some words about prognosis, which is causing some anxiety. First, are you happy with a six-month prognostic period? Secondly, the Bill says that death should

“reasonably be expected within 6 months.”

Is that in line with your thoughts on the matter?

Professor Whitty: I think that is a reasonable point in time provided that, in taking that period into account, Parliament assumes that we mean a central view that this is six months, although it might be before that and it might be after. Other times would be equally reasonable, but if you are going to choose one, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder, and there would be some caution.

Notably, in the countries that have chosen to go down an assisted dying route—a variety of different ones have been chosen—a significant minority of people die before they actually get to the point where that occurs because there is uncertainty in both directions. I think that period is as good as any other, but I want people to be clear that this is not an exact science where you can say, for example, “On 20 August.” It is not as tight as saying that a baby is going be born on a certain date. It has a wider spread of uncertainty around it. In the overwhelming majority of cases, that does not mean that it will go on for months or years longer, but there will be some degree of uncertainty.