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

Jack Abbott Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q I have a question for Dr Clarke and Dr Cox about the registration of deaths, which is dealt with in clause 29. Do you feel that the provisions set out in the clause are sufficient? If not, what further bolstering would provide the oversight needed to ensure that the processes and procedures are followed correctly?

Dr Cox: My understanding of the plan is that in the Bill—forgive me, but I am sketchy on this—the aim is for the registration to be as a natural death. It would not be referred to the coroner, and “assisted dying” would appear on the death certificate.

I am also a medical examiner. My concern is that, as a medical examiner, I am obliged by law to scrutinise all deaths to ensure that a referral to the coroner is not required and to identify any learnings. What concerns me in that role is whether enough recording is happening around decision making and the process to do my job properly. With my medical examiner hat on, do I know what happened? I do not see anything written down in the Bill about the records that are to be kept. What happened when the patient took the substance? What happened afterwards? Were any actions taken in the meantime? That is not so much something I have thought about a lot with my palliative care consultant hat on, but as a medical examiner it concerns me.

Dr Clarke: For the sake of time, I do not have anything to add. I completely agree with that.

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q Dr Cox, may I follow up on one of the things you said earlier? Forgive me if I have misunderstood; I want to be clear. Earlier, I think you said that in the countries that do not have assisted dying, the state of palliative care has improved more quickly than in countries that do. Is that a fair representation of what you said?

Dr Cox: In European countries and American states.

[Jack Abbott]

Q The whole panel has painted—and we have heard this previously—a pretty bleak picture of the state of palliative care in the UK. Would you say that it was better or worse than it was, say, 10 years ago?

Dr Cox: I suppose it depends who you are. If you live in one of the postcodes where you cannot get palliative care, if you are socially deprived, if you are a member of an ethnic minority or if you have a lung cancer diagnosis, you will not get very good palliative care in this country. I think that is awful.

[Jack Abbott]

Q I guess what I am driving towards is that simply not having assisted dying is not necessarily causation for improvement in palliative care. In this country, for example, we have not seen palliative care improve from where it was 10 years ago, the last time this debate came to Parliament.

Dr Cox: The position we would ask you to consider is whether this is the right time to bring in a law to give people a choice of assisted dying, when they do not have the choice to have good palliative care.

[Jack Abbott]

Q Sure. That is a really fair argument. Again, what I am driving towards is the point you were trying to make earlier, which is—I think this is fair to say—that countries that do not implement assisted dying improve their palliative care system. Clearly, that did not happen in the UK, so my guess is that that is not direct causation, is it? There are a number of other factors, although I agree that—

Dr Cox: The NHS is very different from any other jurisdiction—

[Jack Abbott]

Yes, so the direct comparison is not necessarily relevant. Is that correct?

[The Chair]

Order. Can you address the Chair? This is not a dialogue.

[Jack Abbott]

Sorry. I was trying to make a point—

[The Chair]

I understand that, but address it through the Chair.

Dr Cox: Palliative care may well have improved in this country over those years when it also improved in other countries where assisted dying was not available. What we are saying is that there has been chronic underfunding of palliative care, so where we are now is inadequate.

--- Later in debate ---

[Sojan Joseph (Ashford) (Lab)]

Q Alex, thanks for the written evidence and your experience in capacity assessment. We heard from the previous panel, especially from the practising Dr Clarke, how complex it is. She was explaining how she does not think everyone has enough training in capacity assessment, and it is so complex in NHS healthcare areas. You made an observation about multidisciplinary involvement, rather than just two doctors. Do you think having more than two people involved in the decision making can strengthen the Bill?

Alex Ruck Keene: I think for many reasons it can. On the pure capacity side, this is, at one level, an existential question. This is not a healthcare decision but an existential decision. The more people we have who are able to bring their different perspectives—the social work perspective on the person’s social circumstances or the medical perspective on their medical condition—the better, so that we have as many eyes on the person and insights into the person as possible.

It is about trying to make sure that the decision goes back to whether we are really satisfied that the criteria set out at the beginning of the Bill are met. I personally think we should have MDTs, for instance, as you would have in a Mental Health Act detention, so that we have more than one pair of eyes on it from more than one discipline.

[Jack Abbott]

Q Sir Nicholas, I am going to paraphrase a little bit, but you said people with Parkinson’s will never get a terminal diagnosis, so this Bill is no use to you at all—I think you used stronger language than that when you made your original statement.

Sir Nicholas Mostyn: I was sort of taken by surprise when she asked the me the question in the pub, and I would not have phrased it like that in court 50.

[Jack Abbott]

Q Sure. Let us phrase it in a different way today. Would you be able to expand on your thinking there?

Sir Nicholas Mostyn: Parkinson’s is such a complex condition. The medically qualified amongst you will know this—there are so many symptoms, and with the rate of development and the direction of travel, it is an enormously complex condition to know. That is why it is commonly accepted that you do not die from Parkinson’s, you die with Parkinson’s, and it is almost impossible to give a mortality rate as to when that is likely to happen—almost impossible.

When I was doing my research, I was slightly surprised to see that last year 6,000 death certificates had Parkinson’s written on them. They do say that the experts in Parkinson’s are the people with it, but the people you talk to are quite clear that it is impossible to predict and it is a really complex thing. That is why this arbitrary—I use the word technically—six-month period is a problem. If a doctor opines conscientiously and honestly, unless the Parkinson’s patient has already developed pneumonia, sepsis or something of that nature, or complications from falls—the common reasons for death—you will never get that six-month ticket. That is the thing; that is the problem.

[Jack Abbott]

Q In your view—I think you kind of said it before, and I would hate to put words in your mouth—are you saying that Parkinson’s sufferers and other similar—

Sir Nicholas Mostyn: Neurodegenerative.

[Jack Abbott]

Yes, those with such conditions. Are they left out of this debate?

Sir Nicholas Mostyn: They are.

[Jack Abbott]

Q In your view, and that of the rest of the panel, is there a way to legislate to include them?

Sir Nicholas Mostyn: It has been suggested that I want to expand the definition of terminal illness. I do not want to expand it. I want to redefine it so that it is more appropriately focused, in my opinion, on what this Bill should be about, which is the relief of suffering. That is what I believe the Bill should be about. You should get the permission to have an assisted death if you are suffering intolerably within five months of death or seven months of death—there should not be this arbitrary line.

Moreover, it should not be open to people who are not suffering, but who happen to have a six-month life expectancy. There are probably quite a few of them, for one reason or another, whose life expectancy is short, but their pain is well-managed. I do not believe that assisted dying should necessarily be available for them. I do believe very strongly—this is not an expansion, but in my view, a more appropriate focused redefinition of terminal illness—that it should be, as in Spain and in Holland, focused on suffering.

[Rebecca Paul]

Q My questions are to Alex Ruck Keene. Thank you for your written evidence, which I read with great interest. I have two questions for you. This follows on nicely from the discussion we have just had. Is there any risk that if the terminal illness definition were to remain in the Bill, it could be challenged under the European convention on human rights?

My second question, which is completely different—just to mix it up—is on a really interesting point in your written statement about how we need to give consideration to the national suicide prevention strategy. I found that really interesting, because the Bill potentially turns on its head the way we view suicide, and obviously we have been sending a certain message out there, particularly to our young people. Could you elaborate on the point you were making in your written evidence to the Committee?

Alex Ruck Keene: Gosh—yes. There is absolutely no way that you can stop people trying to challenge whatever Act is passed; there is no way you can stop people seeking to challenge that under the ECHR. We then get into this enormous argument about whether it is inevitably discriminatory. Courts to date have been very clear: “We are not going to get into this; it is for Parliament to decide whether to make assisted dying legal.” Once it is made legal for some people, but not for others, there is a difference in treatment. Whether it is discriminatory, and therefore contrary to articles 8 and 14 of the EHCR, depends on whether that difference is justified.

I am trying to be very careful in my language, because I try to do that. The Bill Committee and Parliament need to be very clear how, if you are going to limit this to a cohort of people—I feel acutely conscious that I am sitting next to somebody who would be excluded—it could be explained to somebody that they are not eligible and that there is a difference in treatment but it is perfectly justified. If you cannot do that, it will be discrimination.

The courts have been very clear that you do not have to have a system, but if you are going to have one—for example for social security benefits—then you need to have one that is non-discriminatory. That is the answer I can give to that. The one thing I can say is that you cannot stop lawyers trying to challenge. That is what they will do.

Sir Nicholas Mostyn: All laws discriminate; 69 mph is not an offence but 71 mph is. All laws discriminate. The question is whether it is justifiable.

Sir Max Hill: It is also a question of providing legal certainty, which is why the definitions in the Bill are so important. Provided that it is articulated clearly and within what the European Court so often calls the margin of appreciation, which it gives to sovereign states, then although I agree with Alex that a challenge may be possible, I cannot see a successful challenge to the Bill if it is drawn with the sorts of provisions we have here. Indeed, we have not seen local nation state examples of this sort being struck down by the European Court elsewhere in Europe, so I think it is very unlikely that we would see such a strike-down here.

Alex Ruck Keene: I really hate to get into it with such eminent lawyers, but there has not been a case in Strasbourg seeking to say that a limited class of case is discriminatory, so we just do not know.

Sir Nicholas Mostyn: I agree with that. I have changed my mind twice about this subject.

Alex Ruck Keene: Do you mind if I quickly touch on something else?

--- 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.