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

Sarah Olney Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Lewis Atkinson]

Q I have one follow-up on that. At the moment, we are aware that there are instances across the NHS every day where people make decisions around refusing the treatment that would be required to prolong their life. Doctors, nurses and the healthcare team would be involved in assessing capacity and coercion around those cases. Can you tell me a bit about any learnings from that, about the levels of skill required in the current practice around refusing lifesaving treatment, and about how that might be taken into account in the Bill?

Professor Whitty: You are absolutely right: it is a completely normal part of medical and wider nursing, and other practice, but particularly medical practice, to consider issues of consent and capacity. It can be that someone says they do not want treatment that is clearly going to be lifesaving. A very well-known example is that of Jehovah’s Witnesses, who choose not to have blood products. If they are bleeding heavily, that is an issue that could lead to the end of their life. Provided they understand that and they have capacity, that has to be respected.

The alternative way—the other thing that doctors have to do—is to give people advice before they have major operations, chemotherapy or other drugs that may in themselves lead to the end of their life, but which also may lead to a benefit. Explaining to people the risks and benefits, including the fact that they may lose their life as a result of the next stage—if someone is at high anaesthetic risk, that is not a trivial risk sometimes with operations—is a very standard part of medical practice that you do from the point that you qualify. Obviously, as people get more senior, they tend to be more experienced in it—and, as with most things, if you get more experience, you generally get better at it.

[Sarah Olney (Richmond Park) (LD)]

Q Professor Whitty, the definition of “terminal illness” is attracting some attention. Some people say it is difficult to define a terminal illness. Would it improve the Bill if we had a specified list of illnesses that would apply? Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?

Professor Whitty: If I am honest, I think it would be extremely difficult. If I may, I will explain why, because it is a really important question. Let us take cancer. For the great majority of people with the majority of cancers that are diagnosed tomorrow, the doctor who is seeing them will say, in all confidence, “You have cancer and I expect you to be alive not just next Christmas, but for many years to come.” The fact that they have cancer is not in itself a demonstration that they are going to die. In fact, the majority will not. Almost 80% of people with breast cancer diagnosed tomorrow will still be alive 10 years later, for example.

Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to a death at some point in the foreseeable future. Exact timings are tricky—we might want to come back to that. I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.

[Sarah Olney]

Q Can you talk a little bit more about whether you perceive any difficulties in having a definition of terminal illness in the Act? How do you think the medical profession will interpret that?

Professor Whitty: At the extremes —most people are at the extremes—it is very clear what is going to happen. For most people, you can say with confidence, barring some extraordinary accident like being hit by a car on the way out, “You’ll be fine in a year, even though you have heart disease, cancer or whatever.” At the other extreme, there are people who are clearly dying and will die in the next two or three days, and virtually nothing will change that reality.

What we are talking about in the Bill, of course, is a point between those stages, but people will definitely reach a point where there will be an inexorable and, importantly for the Bill, unreversible slide towards a point of death. People can make a reasonable central view, if they are experienced in a particular disease, about when the death is likely to happen, accepting that there is a spread around that. I am sure that the general public and Members of Parliament fully accept that this is not a precise science. This is a central view, and there is a big academic literature around this. Some people will die significantly earlier than they are predicted to; a small number will die very significantly later; and some people will certainly die a bit later or to some degree later. The central view is usually reasonably accurate—that someone is now on a pathway from which there is not going to be a return.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for coming to give evidence this morning, gentlemen. I would like to pick up on coercion and capacity, because they are two really important points in the Bill. I would like to know a little more about the work that doctors and nurses do to check for coercion and assess capacity when patients are making really important decisions and choices at the end of life, but maybe in other contexts as well. The Bill refers to the Mental Capacity Act. That Act is a big piece of legislation, but I am conscious that there is only a short reference to it in the Bill. Is there anything we could add to the Bill that would improve the robustness of the reference to mental capacity? What does it look like now, and is there anything we could add?

Professor Whitty: Duncan, why don’t you take the first bit and I will take the second?

Duncan Burton: In terms of looking for signs of coercion, all of our nursing and clinical staff have safeguarding training, which already looks at things like whether people are under financial coercion or other forms of abuse. That training is already in place and it is extensive across the NHS and social care. If the Bill is passed, we will need to look at how we strengthen that training in relation to spotting the potential signs of coercion in this space as well. Given that that mechanism is already in place, I think that would be an extension, so it is important that we factor that in. I am also mindful, given the scale of colleagues we have working across health and care, that the time between the Bill being passed and its implementation is sufficient that we enable everybody to receive that additional training, if it is required.

Professor Whitty: In terms of strengthening the Bill, as a practitioner, I was relieved that the decision was for the Bill—if it stays this way—to stick with the Mental Capacity Act, and that was for two reasons. First, that Act is used up and down the country by doctors and nurses every day; they know it and they understand it. Although, as you say, it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, “Does this person have capacity?”, in almost all cases you will get six or seven identical answers, because people are used to using it.

It additionally has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation. Within the legislation, it is very important that there are some situations where you will need to call for additional assistance. For example, if someone has a co-existing mental health condition, you will probably want to ask a psychiatrist additionally whether that condition is interfering with the decision taken to the point that someone loses capacity for this very important decision. The level of capacity has to be reasonably high.

My own view is that starting this way is the sensible thing to do. That does not mean there could not be arguments for some additional points, but I cannot immediately—again, as a jobbing doctor—see ones where I think, “This is going to make a big difference.” The fact is that this is founded on a very established bit of well-used and well-recognised legislation.

--- Later in debate ---

[Dr Opher]

Q In some legal medical situations, you need to be five years post training before you can have a view. Is that something you would have in both of these practitioners, or is that not necessary?

Dr Green: We did not take a view on that. We thought that training and experience was more important.

[Sarah Olney]

Q Leading on from Dr Opher’s question about the “must refer” clause, you and Professor Whitty both stress the importance of the relationship between the doctor and the patient, yet there may be doctors who feel very strongly against mentioning assisted dying. Given the existence of clause 4(5) and the “must refer”, do you think there is a danger that there might be doctors who would be reluctant to provide a prognosis of six months or less if they thought that that would make the patient eligible for assisted dying, and that simply was not something they could support?

Dr Green: That is why it is important that doctors should be able to opt out at any stage of this. There are doctors who would find it difficult to do that, and it is important that their position is respected.

[Kim Leadbeater]

Q On the point about referral, what happens in the case of abortion? That is one of the closest parallels we can get. If we have a doctor who is not comfortable having that conversation, presumably they cannot just leave that person with nowhere to go.

Dr Green: What would happen is that the doctor would provide the patient—through their receptionist, through leaflets or through a telephone number—with somewhere they could get the information. You cannot just abandon a patient. They have to be sure that the patient has the ability to do what the patient wants to do.