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

Debate between Simon Opher and Kit Malthouse

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Kit Malthouse]

As I understand it, I do not think if someone is donating an organ that they do actually have to see a psychiatrist; they have to see somebody who is an appropriately trained assessor from the Human Tissue Authority. To me, that sounds equivalent to the second doctor in our process—someone who is appropriately trained to assess patients and what they need to do. This talk of it having to be a qualified registered psychiatrist, compared with an organ donation, is incorrect.

[Dr Opher]

I completely agree with the right hon. Gentleman. By amending clause 12 to include social workers, who specialise in spotting coercion, there would be a psychological component in that panel. I emphasise that the first two doctors are trained in psychological assessment—they have to be to become a doctor, and we must respect their knowledge and decision making. Psychiatrists will be incredibly useful in difficult cases of capacity, but using them in every case would not be using them in the best capacity.

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

Debate between Simon Opher and Kit Malthouse

Wednesday 5th March 2025 Public Bill Committees

[Kit Malthouse]

As I understand it, I do not think if someone is donating an organ that they do actually have to see a psychiatrist; they have to see somebody who is an appropriately trained assessor from the Human Tissue Authority. To me, that sounds equivalent to the second doctor in our process—someone who is appropriately trained to assess patients and what they need to do. This talk of it having to be a qualified registered psychiatrist, compared with an organ donation, is incorrect.

[Dr Opher]

I completely agree with the right hon. Gentleman. By amending clause 12 to include social workers, who specialise in spotting coercion, there would be a psychological component in that panel. I emphasise that the first two doctors are trained in psychological assessment—they have to be to become a doctor, and we must respect their knowledge and decision making. Psychiatrists will be incredibly useful in difficult cases of capacity, but using them in every case would not be using them in the best capacity.

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

Debate between Simon Opher and Kit Malthouse

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Dr Opher]

I will be really brief because many of my points have been made. Amendments 278, 8 and 124 are about doctor-initiated discussion. One of the really good things about the Bill, for medical practitioners and for patients, is that this law will clarify the situation. It is really important for doctors to know exactly where they stand. As mentioned by the hon. Member for Solihull West and Shirley, if we introduced the types of gagging order set out in these amendments, we would introduce a horrible blurring; doctors could be accused of bringing it up by relatives who do not want it to be done, and it creates a horrible morass in the law. I feel that it is not right to have a gag clause. The reason that it has been removed elsewhere is that it does not work; it does not protect patients and it does not protect doctors. We have to think of it in that way.

There are many ways in which patients can ask about all the options available, and we have to be able to say what they are. We cannot miss out one option because we are not allowed to say it. That is a very unhealthy doctor-patient relationship. If we want to foul up the doctor-patient relationship, this is a good way of doing it.

[Kit Malthouse]

What we have been talking about this afternoon does not necessarily affect the reality of what the vast majority of conversations are like. There are some people who show up, get a terminal diagnosis and are told they are going to die within a matter of weeks, and they need an approach. But the vast majority of people will have been having treatment over a series of weeks and months, and reached a point at which their death becomes inevitable. At that point, they often do—certainly in my family experience—express a desire to know how they can control their own death. Surely a doctor has to be allowed to evolve that conversation over the period of treatment.

[Dr Opher]

I completely agree. Interestingly, I am on a journey here. To begin with, I thought these were good amendments. I thought that we must not introduce certain things—the doctor being a powerful person and so on. I then asked a lot of my colleagues, and they said, “No, no—we’ve got to clarify the law. We do not want this blurring of the law.” I have actually moved in the other direction, and I think it is essential that we do not bring in these amendments. As my hon. Friends said, the BMA has support the subject being raised and there have been changes to the law in Victoria because the gag clause simply does not work. We need to protect patients and, in my opinion, these amendments are not a good way of doing that. The hon. Member for Solihull West and Shirley made such a compelling argument against those amendments, so I will not go on about them.

On Amendment 278, I actually agree with the Member for East Wiltshire, but probably for different reasons. Again, if we introduce the amendment, if the doctor does not see that a patient has said that they do not want assisted dying and they bring it up, the Bill will potentially criminalise their behaviour. I feel that would not work and it would complicate the law.

I agree with amendments 319 and 320, tabled by my hon. Friend the Member for Bexleyheath and Crayford, which concern age. They would be a good and—alongside his amendment 339—functional change to the Bill.

Amendment 270 is about psychological assessment. As far as I can read in the Bill, as part of the panel process, which we have not yet discussed, there will be a psychological and psychiatric assessment of the patient. Also, when assessing someone with a terminal illness, most doctors will assess their mental health.

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

Debate between Simon Opher and Kit Malthouse

Thursday 30th January 2025 Public Bill Committees

[Kit Malthouse (North West Hampshire) (Con)]

Q Professor Hoyano, I am interested to explore your views on the third layer. I understand your view about the Court of Protection, but we have heard in previous evidence, not least from eminent members of your profession, that the Spanish model of a panel of experts might be an option worth examining. In those circumstances, what is your view of the investigatory processes, either for that or for the Court of Protection, or the type of evidence that might need to be adduced? What could be specified in the legislation as a requirement on those people involved in the process?

Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.

If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.

The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.

It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.

This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.

There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.

I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.

[Dr Simon Opher (Stroud) (Lab)]

Q My question is directed to Amanda and Laura. There is a lot of natural concern about coercion with the Bill. We recognise that it is a difficult thing to assess. Would either of you change the wording of the Bill to make coercion less likely?

Dr Ward: Which clause are we looking at?

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

Debate between Simon Opher and Kit Malthouse

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Kit Malthouse (North West Hampshire) (Con)]

Q Professor Hoyano, I am interested to explore your views on the third layer. I understand your view about the Court of Protection, but we have heard in previous evidence, not least from eminent members of your profession, that the Spanish model of a panel of experts might be an option worth examining. In those circumstances, what is your view of the investigatory processes, either for that or for the Court of Protection, or the type of evidence that might need to be adduced? What could be specified in the legislation as a requirement on those people involved in the process?

Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.

If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.

The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.

It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.

This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.

There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.

I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.

[Dr Simon Opher (Stroud) (Lab)]

Q My question is directed to Amanda and Laura. There is a lot of natural concern about coercion with the Bill. We recognise that it is a difficult thing to assess. Would either of you change the wording of the Bill to make coercion less likely?

Dr Ward: Which clause are we looking at?

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

Debate between Simon Opher and Kit Malthouse

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Kit Malthouse]

Q How would you seek to improve the Bill in order to make them eligible?

Dr Hussain: I think it is really complex, isn’t it? The very existence of the Bill affects everyone who needs end-of-life care. It opens a Pandora’s box of risk. For those people, absolutely—when I am a physician and I am in front of them, I think, “What is the best palliative care I can provide for them?” However, when I put my population health hat on, I think about how it could impact the whole community. As I said, I work predominantly with an ethnically diverse population. I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, “We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared. We already don’t access your services. We’re really worried that we won’t want to access them any more, and we won’t want to access the hospitals.”

That is the conundrum. If I want to open it up for that quite small proportion of people towards the end of life, I risk that much bigger group. That is why the decision is very tricky for me, even as a frontline clinician who is not against assisted dying in principle.

Dr Neerkin: I would like to break it down, thinking about what a terminally ill person is within the Bill. You have heard from quite a lot of people, and sometimes it is very clearcut, such as for cancer patients who have quite a clear trajectory in those last few months of life. It is much clearer for them than, maybe, for somebody with a neurological condition. People with those neurodegenerative disorders can go on for a much longer period of time. When you can recognise that they are already in the last six months of life, invariably by that point they may well have lost capacity to make those decisions. They may well not have the physical ability to take the medication at that time.

That is when you get those potential discrepancies: when you are defining “terminally ill” and whether or not one size fits every disease process for patients. I think that is aside from how much pain they are suffering, and whether or not it is because they want to retain control, it is also about the speed with which people will need to receive assisted dying. When you are rapidly deteriorating from a cancer prognosis, it may be that the two or three-week delay between different doctors, and everybody assessing it, might be too long. We have already heard, over the past couple of days, that people invariably die before they get the chance to take the medication themselves. However, there are also people who have a slower decline, who can actually have that long period of time for reflection, and that is quite important. I am not sure if that approaches the answer to your question in a slightly different way to Dr Hussain’s answer.

[Dr Opher]

Q I was interested to hear what you were saying about not all symptoms being controllable with palliative care. There is an argument that we do not have good enough palliative care, so we cannot bring in assisted dying. I think it may be a little spurious. What are your thoughts about the relationship between palliative care and assisted dying? That question can go to any of you.

Toby Porter: Can I take that? That is something we feel quite passionately about. People pointing out problems with palliative care in the UK is not a pro or anti position in this debate. It is a statement of fact. Clearly, extrapolating that through, an outcome in which someone chose an assisted death because of a real or imagined fear that they could not get pain relief or other symptom alleviation, or because their family would not get support through their illness, would clearly be a moral and practical disgrace for any country. I think that is why people who are passionate about palliative care would obviously be concerned, but I think they also would be very encouraged by the fact that everybody who spoke at the debate in November, without exception, expressed commitment for improved palliative care, irrespective of what they felt about the rights and wrongs of the motion that they were considering.

Dr Hussain: I do not think I have come across a palliative care physician who does not accept that not all symptoms can be managed, but there is a lot that we can do. In my experience and in that of a lot of my colleagues, this is a tiny proportion of patients. Usually there is stuff we can do. Often—in all those cases in my practice, I have admitted them to a hospice and they have had a holistic assessment. If needed, some of them have gone under carefully titrated sedation. There is a lot we can do. That does not mean that we do not need assisted dying. Like I say, there are patients I have come across who do need that.

The complexity here, though, is that making it available to those people that I would love to have it available for, because that is a good death for them, opens this risk to everyone. Like I say, ethnic minority communities are afraid that they are going to be targeted and they are saying that they will not access palliative care services. There are people who may want it because they feel coerced, even internally, because they feel like a burden, or due to social issues, especially those people who are structurally disadvantaged. That is what I find really difficult to weigh up. We cannot pretend that that is not going to happen. That is a much bigger proportion of the patients I see in Bradford.

Sam Royston: No matter how passionately they believe in assisted dying, no one I have ever spoken to has said they think that a good reason for choosing an assisted death is that people cannot access the care and support that they need at the end of life. Yet we know that that is the reality for far too many people at the moment. We know that about 90% of people who die need palliative care and it has been estimated that about one in four of them does not receive the care and support that they need. We know that many people are dying in emergency departments following unnecessary admissions to hospital, or dying in the back of an ambulance.

Beyond clinical support, we also know that there are many thousands of people for whom a terminal diagnosis means being pushed into poverty. We have just estimated that more than 100,000 people each year die while living in poverty. You are particularly likely to die in poverty if you are unfortunate enough to become terminally ill and are working age. In fact, you are much more likely to be in poverty if you are working age if you are terminally ill than if you are not.

Some of these problems are only going to grow in coming years. We project that over the coming 25 years, the need for palliative care is going to rise by about 25%. That is around 150,000 more people each year needing palliative care. And we have no plan—no plan at all—to address the scale of that challenge. This crisis in our health and social care system in the support we provide to dying people cannot be the reason for introducing assisted dying. We need to make sure that there is a plan to improve palliative care support for people at the end of life.

That is why we have proposed an additional clause to the Bill that would require an assessment of current availability, quality and distribution of health and care services for people at the end of life—something that, unbelievably, does not exist at the moment— quality standards for palliative and end-of-life care services; a national strategy for palliative care, which has not existed since 2008; a long-term sustainable funding strategy for palliative and end-of-care life care; and an approach to establishing NHS leadership for the delivery of that strategy. Those are the key things that we need to see to make sure that we have a palliative care system that is fit for the future.