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

(Limited Text - Ministerial Extracts only)

Committee stage
Tuesday 28th January 2025 Public Bill Committees

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

Q I have a question for Alex Ruck Keene. I noticed the concerns in your evidence about presumption of capacity, and I know that you have written in the past about concerns over different disciplines having different definitions of capacity. Later on in your evidence, you also mention multidisciplinary consideration of circumstances in assessing eligibility. How might that multidisciplinary eligibility assessment alleviate some of your concerns in relation to capacity decisions?

Alex Ruck Keene: We have capacity, but we also have to make sure that it is settled, informed and voluntary, and that we do not have things like pressure or influence going on. It is important to make it clear that we are not just saying that this is about all the weight going on capacity. For instance, if you have social workers involved—if you have, say, palliative care social workers involved, assuming it is a palliative care situation—they are going to be far better informed about what options might be out there than a doctor, potentially, depending on the doctor. Social workers more generally might well have more expertise in picking up signs of coercion or influence than a doctor, but I do not necessarily want to get into, “Some disciplines are good at X” and “Some disciplines are good at Y”—I have come across brilliant examples and bad examples in both zones.

It is partly about multidisciplinariness and also about the fact that you have more than one person trying to talk it through. When I train, I always try to tell people that 85% of capacity assessments are not all that difficult —they are just made difficult because you do not have time or you are not listening—but 15% are more difficult. I think a lot of these will be in the 15% zone, and in that zone, the more people you can have thinking about it, so long as they have an agreed framework within which to think, the more reliable, transparent and accountable the outcome is going to be.

[The Minister of State, Ministry of Justice (Sarah Sackman)]

Q I want to pick up on your evidence, Sir Nicholas, in relation to the panel that we have just been discussing with Sir Max. I have three questions. First, what do you envisage the panel doing under your model? Will it be ensuring that a lawful process has been followed or doing something more than that?

Sir Nicholas Mostyn: The former.

[Sarah Sackman]

Q That is helpful. Secondly, what information do you think the panel will need in order to reach a determination on that question?

Sir Nicholas Mostyn: It will have the statements in schedules 1 to 4, signed by both doctors twice. This is where it gets slightly tricky. Is the panel expected to be a ferret and say, “This does not quite chime for me”? The Committee will have to consider how investigative the panel will be, or whether it will purely sit back, be passive and work on the material it has. Of course, under clause 12, it has to hear orally. That might get the alarm bells going, but I believe that the panel should be entitled to call for further evidence if it has concerns. As I say, I have been trying to find out why 10% of cases were rejected by the panel in Spain. There must have been some kind of procurement of further evidence by the panel in order to do that.

[Sarah Sackman]

Q I suppose my third question, then, is how do you envisage such a panel, if at all, interacting with the High Court—with, say, a final right of appeal to the High Court, similar to what is in the Bill?

Sir Nicholas Mostyn: Article 10 of the Spanish law gives an appeal on a point of law to their high court, so I would have the same, with an appeal on a point of law to the High Court, but only on a point of law.

Alex Ruck Keene: Either way—it would have to be either way. It could not just be against a decision not to approve, logically, because the current model is very odd in saying that you can only appeal one way to the High Court.

Sir Nicholas Mostyn: Yes. Spain gives either side the right to appeal, so I agree with that, but it is confined to a point of law.

Sir Max Hill: I would only add that I wonder whether that is the only route through, namely leaving open a judicial review appellate process, or whether, for example, as we imagine with a number of commissioner-led processes already in this jurisdiction, the panel—or frankly, I suspect, panels, which might sit regionally, chaired perhaps by the retired judiciary—would have an appellate route to a national body, which you could call a national commission, instead of a judicial-review route to the Court.

There are a large number of commissioners, some sitting under the Home Office and some sitting under the Ministry of Justice—in a sense, I was a commissioner when I was the independent reviewer of terrorism legislation—with closely defined powers. There are many others who sit in an enhanced regulatory position—highly qualified individuals. You could describe them as national commissioners, if that is an appropriate term, and they would have superintendence over regional panels, and the power to appoint retired judiciary, perhaps with the assistance of the Official Solicitor, to sit on those regional panels, and then to have an internal appellate mechanism.

Sir Nicholas Mostyn: You have to have an appeals process of some type, because otherwise there will be judicial review. If there is no appeal, there is judicial review—so you have to have an appeal of some type or there will be judicial review.

Sir Max Hill: Yes, I agree.

[Sarah Sackman]

Thank you.

[The Chair]

We have some Members who want to ask more questions; we have about six minutes or so. Jake Richards, you did have a possible question earlier on.

--- Later in debate ---

[Jack Abbott]

Q I will keep my question quite short. Is there anything about the law in either of your jurisdictions where you think there could be improvement, and that we can learn from in drafting our legislation here?

Dr Kaan: The thing I have been reading about that is concerning to me is the court approval that you seem to have written into your law. I heard your discussion this morning about how that might be done and whether it is a committee or the High Court and so on. I think that that is really going to limit access to this, and that makes the process a much lengthier one.

Again, these are people at the end of their life. People are not looking, by and large, to cut off a huge amount of their life; they are looking to shorten their death, not shorten their life. By making people go through a court appeal in addition to two qualified physicians, as well as the waiting period, I think that you are going to limit access for people who desperately want this option. It seems like that might be baked into your law, but I would say that that is a concerning feature to me. I think that you are going to limit access that way.

Dr Spielvogel: Something that it turned out was not in our law, but everyone thought that it was for a few years, and it really limited our practice, was that many people were under the impression that the physician could not bring up assisted dying with the patients, and that the patients had to bring it up themselves. That turned out not to be in our law, but that idea really hampered our ability to take care of patients, so I would strongly recommend that there not be anything like that in your Bill. People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors—we all know that this exists—even if this Bill becomes law, the general population is still not going to realise that it is an option.

I eat, sleep and breathe this. I am a primary care physician, and when I am going through the options with patients who are newly diagnosed with a serious life-threatening illness, I say, “Okay, here’s what disease-directed treatment would look like. We can continue with your chemo. Here are some side effects and complications that you might have, and here are the benefits of that. Here’s what palliative care or hospice care would look like.” Then I say, “I don’t know if you know this, but in our state we have this other option for people nearing the end of their lives when they have intolerable suffering. You can ask me to fill a lethal prescription for you to help end your suffering sooner.”

The number of times that people look at me and say, “You can do that? That’s an option here?” is astounding. I would say that nine out of 10 of patients I have conversations with have no idea that that is even legal. If they do not know it is an option, they are never going to ask for it. For physicians to do their jobs properly and deliver care to people, and for people to actually have a choice, physicians need to be able to discuss it with their patients.

Dr Kaan: I will just piggyback on that. I cannot count the number of times I have given a presentation or a talk to communities, and people—usually family members of someone who have died, not using this law—have come up to me afterwards and said, “Thank you for what you said. My loved one was interested in having this information, or wanted to talk to their doctor about it, but their doctor never brought it up, so we weren’t sure if we should be bringing it up.” It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much and, as Dr Spielvogel said, you cannot have an informed decision-making discussion with a patient if they do not have all the options available for discussion.

[The Minister for Care (Stephen Kinnock)]

Q I want to drill down a bit more on the question of training. Could you say a bit more about how the training works? Is it mandatory for everyone who takes a medical qualification to a certain standard? How many class hours are required? Is there an in-practice shadowing process? Is there an assessment process to verify that the person is qualified as a result of the training? I am just trying to get a better sense of the detail of the training. I will perhaps start with Dr Kaan.

Dr Kaan: That is a really important question, because this is a really important topic in the United States. Our laws are very clear that participation is voluntary, so there is no such mandatory training across medical training in general. It is always voluntary. If a physician or provider wishes to have training, they can seek it out. What is available and the standard of care differ from state to state. Certainly, in the state of Washington, where I am the medical director of the organisation that is most largely involved with this, the bulk of my job is doing training, mentoring and shadowing. There is no exam at the end of that process, but there is certainly shadowing and a feedback process.

I am also heavily involved with the Academy of Aid-in-Dying Medicine, which has been very active in creating professional training. We have a Journal of Aid-in-Dying Medicine, which is a peer-reviewed journal that puts out articles that are relevant to the topic. The Academy of Aid-in-Dying Medicine is now undertaking certification pathways, so each level of provider—social workers, chaplains, physicians and anyone else who might be involved in the aid-in-dying process—will be able to take these certifications. A more uniform education system will be available. We are just at the beginning of creating those, but it is very exciting, and we are very happy to have those out. A lot of resources are out there in the world already, in general, to train providers in how to do this well, and it would be really smart to have something in your Bill that outlines what the training should be, whether you will make it mandatory or voluntary and perhaps some sort of certification pathway.

[Stephen Kinnock]

Dr Spielvogel, I do not know whether you have anything new to add to that. If not, that is fine.

Dr Spielvogel: Without repeating anything that Dr Kaan said, I was just going to say that in addition to my assisted dying hat, I am also the programme director for the family medicine residency programme, so my main job is actually training young physicians who are becoming what you would call GPs.

We have instituted curricula as part of our residency programme here to train interested physicians in learning how to do assisted dying. We go through a whole process for that, including lectures, them shadowing me and me shadowing them, listening in on their conversations, giving them pointers and walking them through the steps of the process. They then do this with multiple patients through the course of their residency, so when they graduate, they feel confident in being able to offer this care. As with most medical training, this should be included in that part of the training process. All the other things, such as pathways in continuing medical education, are very important for physicians out there in practice who want to start doing this, but really getting this into medical training at its roots is vital for normalising the practice.

Speaking of which, something else I have heard a lot is that this might be distressing to physicians, or that physicians would not want to offer this care. I would like to say that 80% of our residents on our programme opt to receive this training. When we did a study on this of graduates from our programme who were continuing to offer assisted dying, 70% of the surveyed residents said that their assisted dying work was more rewarding to them than the rest of their primary care work—70% said that it was more rewarding.

I want to come back to the notion that physicians would feel burdened or that this would be some sort of psychological negative to physicians practising it, because it is actually quite rewarding work. It has led me to be a better physician to all my patients because it has helped me with having these difficult end-of-life conversations with them. That was a bit of a twofer, sorry—I added that on there.

[Danny Kruger]

Q I have four very quick questions. I would be grateful if you could try to answer them quickly, because we have to let everybody else in before the end of the session. Dr Spielvogel, I was struck by you saying that nine out of 10 patients to whom you have suggested this option were not aware of it. How many people who did not know about it before and to whom you might have suggested assisted dying as an option do you think have taken it up? How many people do you think benefited from you telling them about the option?

Dr Spielvogel: A lot. I have actually been quite surprised. Everybody is different. This is the whole point: different people have different goals, objectives and values. I have mentioned it to people who say, “No, I would never do that,” and I never bring it up to them again.