Terminally Ill Adults (End of Life) Bill

Neil Shastri-Hurst Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

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

It is a privilege to speak in this debate, and the way in which the House has conducted itself on both sides of the argument is a credit to this place.

I stand here not only as a medical practitioner who worked as a surgeon for about a decade, but also as a healthcare barrister, so I have looked at the debate from both sides of the argument. I have been deeply moved by some of the stories I have heard about patients who are facing a terminal illness. I am also instructed by my own experiences—my personal experiences of my relatives, and of those patients whom I failed. I failed because I did not give them the good death that they deserved, despite the very best efforts of palliative care.

It is true that we can improve the palliative care offering in this country, but it is not a binary choice. It is not a choice of palliative care or assisted dying; it is a choice about someone having an option over how they want autonomy over their body at the end of their life. I understand the concerns raised in this House—I genuinely do—but this is not the point to cancel the debate. This is the point to engage in the debate. This is the point at which we move it forward, so that people can contribute to it in Committee and say how things can be improved, and so that we can work together to make a societal change, improve our society and support those who want that ultimate choice in those last days.

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

Neil Shastri-Hurst Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[The Chair]

Order. We are now in formal session, so I gently remind the hon. Gentleman that in formal session we refer to Members by their constituencies and not by their names. I am the only person who uses names, because I can never remember constituencies.

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

I, too, commend the hon. Member for Spen Valley for her efforts in pulling together this list; it is an unenviable task, given the number of contributions that were made.

It is important that we do not let the perfect become the enemy of the good. There is a wide range of individuals and organisations that we would all benefit from hearing from, but given the time available to the Committee—which is much more extensive than most private Members’ Bills have, by some margin—we are not in a position to hear oral evidence from all of them. But there is an open invitation for everyone to contribute written evidence and for us, as my right hon. Friend the Member for North West Hampshire noted, to speak to engaged parties outside the Committee to feed into our thought processes and deliberations.

On the amendments tabled, I understand the reasons for amendment (b) on the Royal College of Psychiatrists, but I have to say that I disagree. The hon. Member for Bradford West said it was about coercion. I could understand if she were making an argument that we need to hear from the Royal College of Surgeons about the issue of capacity, so I do not think that this is universally confined to psychiatrists; it is something, as a surgeon, I dealt with every day when I was getting consent for operations. We have to think about how we get a wide range of opinions on the subject: we have the Chief Medical Officer, who can comment on such issues from a policy perspective; we have the BMA, which I am sure will send representatives who will be most able to deal with the questions that are to be asked; and, of course, we have the General Medical Council, which is the ultimate regulator and arbitrator of this issue.

The Committee is also about ensuring that this legislation is as fit and as robust as possible when it goes back to the House for consideration. That is where I think that having a legislator from a jurisdiction in which this has been implemented is crucial. Not having the member for Sydney in the New South Wales Parliament—where they have implemented this, and have dealt with some of the thorny issues that the Committee and subsequently the House will have to deal with—would be a mistake. Likewise, having more geriatricians and palliative care physicians is a better balance than having those with some other expertise—well-meaning as they may be, they are not necessarily dealing with this at the coalface. I do not support the amendments for those reasons.

[Jake Richards (Rother Valley) (Lab)]

I will not speak for long. I merely echo what my hon. Friend the Member for Sunderland Central said: this is not an arms race. It is not about who can get more experts with different views; it is about trying to get a wide-ranging and broad sense of different aspects of the Bill. The list that my hon. Friend the Member for Spen Valley has produced does that. I made suggestions that are not on it, by the way, but as the hon. Member for Solihull West and Shirley says, we cannot let perfection be the enemy of the good.

I want to push back briefly on some things that have been said about the lawyers and legal experts. I do not accept what the hon. Member for East Wiltshire says about whether they are for or against, and I am not sure that his numbers tally with my reading of their views. That goes to the subjectivity of this issue. It is not black and white; lots of people have complex views on it.

I am not sure whether amendment (g) was moved, but in any event the notion that issues such as ECHR compatibility cannot be handled by Lord Sumption, Lord Neuberger and Baroness Hale—three former Supreme Court judges and potentially the best legal minds of their generation—is frankly absurd. We all have roles and responsibilities, as members of this Committee and as Members of Parliament, to challenge their evidence and to push different cases. I have no doubt that we are all qualified and able enough to do so without hearing from a junior barrister and a junior lecturer. That is not in any way to belittle their expertise, because I have read endless commentary from both the suggested witnesses that is very valuable and could be put to the three former Supreme Court justices, who grappled with such cases time and again.

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

Neil Shastri-Hurst Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[The Chair]

Thank you very much. For broadcast purposes, can everyone make sure that they are as loud and clear as possible?

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

Q Good morning, gentlemen. The initial discussion is dealt with in clause 4 of the Bill. There has been some significant concern about whether doctors should be initiating that conversation with patients who are terminally ill. The Bill states, in subsection (1):

“No registered medical practitioner is under any duty to raise the subject of provision”.

What are your views on the compatibility of that element of the Bill with the principles under Montgomery consent?

Dr Green: Both of these items came about because of things that were in our policy, and we are pleased to see them in the Bill. You are right that assisted dying must not become just another tick-box thing that doctors mention to patients. That must not happen, and that is why we believe that it should not fall within those two Supreme Court judgements that you mentioned. But there is another side to that coin: we think that there are some circumstances in which doctors should be able to mention this to their patients.

I will just explain why that might happen. The consultation shows that some patients find it very difficult to bring up sensitive subjects with their doctors, even when those are the most important thing on their mind. Doctors are aware of that, and I hope that we get very good at reading between the lines of what patients say to get at what is left unsaid. In those circumstances, we need to be able to open the door for the patient, so they can go into a safe space and have those difficult discussions. That is what we are talking about here.

As a clinician, it is very difficult to know when to have those conversations. When we are battling with that internally, the last thing we would want is to feel the weight of legislation behind us, so please do not pass legislation that makes it harder for doctors to understand their patients. That is why it is important that in particular circumstances we should be able to gently raise the subject.

Mark Swindells: The GMC sets guidance on decision making and consent, as you will know. That is based on the existing law, including the case law on Montgomery, so it puts a lot of weight on the patient’s autonomy, the patient’s role and the doctor’s role in supporting that in the provision of information on different options, including the option of no treatment. Our guidance follows the law, so were the law to change, we would look at it and accommodate. We do not have a formulated view on what the eligibility should be, but we know the BMA’s stance.

[Dr Shastri-Hurst]

Q Has the GMC undertaken a legal assessment of the openness to legal challenge around that Montgomery point—if those conversations were not initiated and patients say that they were not given all the options available to them?

Mark Swindells: We have not done a forensic legal assessment of that nature, but obviously Montgomery is in case law, and Parliament has the power to set primary law. I listened to what the chief medical officer said and what Dr Green says about how restrictive or otherwise that might be in terms of the doctor’s role with the patient.

[Jack Abbott]

Q This might sound like playing devil’s advocate, and I fully appreciate that you do not want to reduce this to a tick-box exercise, as you described it. Some might argue that the risk of what you describe is that it creates a lottery, because you would be relying on doctors to use their personal judgment as to when to have that conversation. For example, if a patient and doctor do not have a particularly close or long-standing relationship, the doctor may not know what the signs are, so the patient, who may need to have that conversation, may never have it. The risk is that you would be reliant on good relationships forming over time and doctors using their intuition, so that some patients will have the conversations they need but others will not.

Dr Green: Obviously, it would be great if we worked in a system where doctors had all the time they needed to deal with their patients. I believe that the Bill mentions a duty to provide information from the chief medical officer, and having read the Bill, to me it seems very much like this might be in the form of a website or leaflet. We believe that it is important that patients should be able to access personalised information, and we would like to see an official information service that patients could go to, either as a self-referral or as a recommendation from their GPs or other doctors. That would give them information not just about assisted dying, but about all the other things that bother people at this stage of their life, and it would mention social services support and palliative care. It could be like a navigation service as much as an information service. That might address some of your concerns.

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

Neil Shastri-Hurst Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Juliet Campbell (Broxtowe) (Lab)]

Q I have a question for James Sanderson and one for Dr Clarke. They are quite similar, but I will refer to things you have said. James, you said:

“Sadly, only half the people who need palliative care receive it.”

In your opinion, who are the people who receive palliative, and who does do not?

My question to Dr Clarke is similar. You have talked about the population being

“carved up into two groups…those who deserve to live and those are expendable”.

Could you expand on that quote and the two groups you referred to, as well as the impact that has on their treatment and care?

James Sanderson: You draw a really important point about not just the provision and totality of palliative care across the country but the inequity of access. Unfortunately, we find that the diversity of people who are accessing care in hospices across the country is less than those who are dying in hospital—43% of people currently die in hospital.

One of the things we really need to do is move to a new ecosystem of palliative care that looks at supporting people in different settings. We need specialist provision in hospices to support people with significant needs, but increasingly hospices are reaching out beyond their walls into the community, and 80% of Sue Ryder’s work is in people’s own homes. People tell us that they want to die at home, so supporting people in their own homes enables us to access more diverse communities and get to people in their own setting.

Increasingly, one of the things we feel is necessary is the provision of support inside hospital. Alongside wards, we would bring support to that 43% of people who are currently dying in hospital, to ensure there is equality of access in all places, both in in-patient settings and in the community. You draw a really important point that we have to look at the totality of provision and ensure that, when someone is offered palliative care—the Bill talks about that provision being available—there is universal access, in terms of the type of palliative care available and the access for everybody in society.

Dr Clarke: My comment refers to the fact that there is an immense gulf between the theory of the NHS being a cradle-to-grave service—or a service that cares for us at the end of life as it does at the start—and the reality. The reality that I see every day at work in my hospital is patients coming into the emergency department from the community sometimes in utter, abject misery, in agony, with a lack of dignity. They have been forgotten completely. They are not getting healthcare or social care, and no one cares about them.

Even in the hospital, patients who have a terminal diagnosis are sometimes cast out into the corners of the hospital. There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard. That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society.

It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.

[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.

--- Later in debate ---

[Daniel Francis]

Q Alex, in paragraph 8 of your written evidence you touch on clauses 9, 15 and 18 of the Bill and the potential complications that could arise when the substance is taken. Could you expand on the concerns you have about that?

Alex Ruck Keene: I should make it absolutely clear that all I am trying to do is make sure that whatever law is passed is a good law and has as few inadvertent consequences as possible. My concern here arises out of the fact that understandably the proponents of the Bill want to make it very, very clear that this is about people carrying out a final act, and no doctor is allowed to do something that involves going beyond that. At the same time we have a situation where doctors—I am using the word “doctor” slightly loosely, but for present purposes that is what we are talking about—have to be present and have to remain with the person. We know that there will be some people for whom there are complications.

My concern is to make sure that there has been sufficient consideration given to what exactly a doctor is meant to do at that point, because it seems to me that it ends up putting the person who is undergoing those complications in a horrible position. It is also—I am perfectly happy to use this phrase—putting the doctor in a position of extraordinary moral distress. Are they at that point supposed to try and rely on the doctrine of double effect and say, “All I am trying to do is treat the complication, not bring about your death,” but the Bill is saying, “No, you are not allowed to do that”? I understand entirely why the intention is to say that the doctor must always be hands off, as it were, but you need to super clear that you are going to put some people in some very, very difficult positions, and Parliament needs to be clear-eyed about that.

[Dr Shastri-Hurst]

Q I want to stick with clause 18, because as it stands there can be some assistance by the clinician but there cannot be total delivery or administration by the clinician. You could end up with a scenario where, for instance, you have somebody who is tetraplegic and then gets a terminal diagnosis, has capacity to make the decision and wants to end their life, but they do not have the physical means of doing so. Do you think that is open for challenge on grounds of discrimination?

Sir Max Hill: I would not look at it on grounds of discrimination. What I would do is put that clause alongside what are generally referred to as the slippery slope arguments in other jurisdictions. In other jurisdictions—Canada might be one and some of the US states might be another—the provision of life-ending medication is expressed in a form of treatment by a doctor. This is not that. We are clear when reading clause 18 that it is not a permission to administer; in fact, it is a prohibition on administration. It is making available in certain tightly defined circumstances and then standing by—not necessarily in the same room, as stated in subsection (10)—while the self-administered medication takes effect.

Having said that, I am absolutely clear that there is only so far a Bill or Act of Parliament can go as primary legislation. There is then further distance that must be covered by the provision of practical and professional rules, under the auspices of the national health service here, to indicate precisely the circumstances in which this will physically happen. I do not see that as discriminatory; we are dealing with a tight category of defined individuals to whom this applies and it does not apply to anybody outside that, as we have just discussed. But it is not prone to the slippery slope arguments of something that is generally to be made available in the course of treatment. In fact, the Bill has been couched in a very different way.

[Dr Shastri-Hurst]

Q Sir Nicholas, can I bring you in on that? You referred to it directly in your proposed amendment.

Sir Nicholas Mostyn: I did. What particular aspect do you want me to address? The range is quite wide. In relation to the administration of the substance, it is interesting that in Spain, which is now in its second full year of doing this, take-up has been extremely low. There have been only 700 requests, with a quarter denied, and a quarter of the people died prematurely. Three hundred were granted, but of those 300, in 95% of cases the substance was administered by the doctor and auto-administered in only 5%. I am trying to work out why that is, culturally, in Spain. Maybe people go when they are extremely infirm, and that is the reason for it. I am not able to see the moral distinction between having the substance administered and auto-administration. On your question, there are devices that enable somebody who is locked in to end their lives by a blink of the eyelash, aren’t there?

Sir Max Hill: Yes.

[Lewis Atkinson]

Q We have heard from two witnesses—you, Sir Nicholas, and Dr Ahmedzai from the earlier panel—on the question of judicial oversight. While we have you here, Sir Max and Mr Ruck Keene, what are your observations on the proposals from those two witnesses that an alternative to a High Court judge overseeing the process would be some form of panel or tribunal, potentially multidisciplinary? What is your view on that and the legal implications for that?

Sir Max Hill: I would say two things. First, it bears weight that, looking at all the provisions in the Bill, the additional level of scrutiny currently being called judicial scrutiny or approval is absent in all the comparative examples around the world. That already makes this a tighter pre-legislative model than we see in other countries that have gone down this route. That is worth remembering.

Secondly, while I am not a family lawyer—I was, but a very long time ago—I think that the family division of the High Court would be very well-placed to perform the sort of exercise enshrined in current drafting, which is not a rubber-stamping exercise, but a substantive consideration of heavily objective medical opinion arrived at by not one, but two doctors, one of whom is not the treating doctor.

I listen to and accept the question of pressure on the justice system generally. That is something the Committee will be concerned about because, if the Bill passes, we want something workable. I heed what Sir James Munby said. The sitting judiciary, for good constitutional reasons, is highly unlikely to say anything. But there is therefore merit in looking at clause 12, under the heading, “Court approval”, and performing quite a simple exercise, which for me would be going through subsections (1) to (6) inclusive and, where it says “High Court”, replace that with something else. Personally, I have an aversion to the word “tribunal”, which indicates a right and wrong or some kind of fault-based system—that is not what we are talking about here. But a panel, as Nick said, is the way to go—

Sir Nicholas Mostyn: A panel appointed by the Official Solicitor.

Sir Max Hill: Whether appointed by the Official Solicitor or not. Dare I say it—because I am sitting next to a very distinguished one—I do wonder about the recently retired members of the judiciary and the role that they could play under a replacement panel system.

Sir Nicholas Mostyn: That is what I had in mind—the Official Solicitor looking at the retired judges.

Sir Max Hill: Yes, so there is legal professional capacity among the retired judges—not that they would sit alone on a panel. It would bring with it the extra benefit of having suitably qualified medical professionals, like the Spanish model. So yes, I think that could be done. That is not the same thing as saying that the High Court approval model is fatally flawed and could not be introduced, but I do think there is a viable alternative, which is worth looking at.

Alex Ruck Keene: I have only one observation, and I said this in my written evidence but I also want to say it out loud. You have to think very carefully about what purpose any form of this oversight is actually serving societally, if the oversight panel, whether that be a judge or a panel, cannot decline to approve an application if it considers that the reason the individual is seeking assistance in dying is because of service provision failures by the statutory bodies responsible for meeting their health and social care needs. That is a question of principle, and I want to make sure that that is squarely before you.

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

Neil Shastri-Hurst Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Kim Leadbeater]

Q Was it a multidisciplinary board that Dr McLaren set up to look at the safety and quality of voluntary assisted dying?

Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.

Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.

It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.

We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.

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

Q Dr Fellingham, to circle back to the issue of training, could you go into more detail about what the initial training consists of—the nature of it and the number of hours—and how that compares with the refresher training? What is the system for mentorship, supervision, appraisal and continuing professional development requirements?

Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.

To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.

Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.

Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.

We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.

In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.

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

Q Could you talk us through eligibility with regard to neurodegenerative diseases, and whether you have in place any variations and considerations for things such as Parkinson’s or motor neurone disease? Is the main delivery mechanism for VAD in Australia the mainstream health service, or is it delivered through a separate wing, arm or organisation?

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

Neil Shastri-Hurst Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

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

Q I want to ask about capacity. Chloe, I think you said patients are sometimes given the drug some time before they die, so I want to understand where capacity assessments are taken and at what stage during the process.

Dr Furst: Capacity assessments are taken every time a doctor sees the patient. In my state, that would be at first assessment—first request—then a consulting doctor would come and do another hour-long assessment of the patient and assesses capacity at that stage, and then I would come back as the co-ordinating doctor for a second or third assessment of the patient, and assess capacity. They would then be given their drug, if it is self-administered. We assume and hope that they retain capacity, and we strongly advise patients and families that, should they lose capacity, they will have voided their permit and they cannot take the drug, but there is less oversight of that. However, we know that the majority—over 80%—of these patients are connected with palliative care, so we often have community teams going in and seeing them, and we are still touching base with them, maybe more peripherally, and checking capacity as we are having conversations or as we are coming and doing home visits from a palliative care perspective. If it were deemed that the patient is quite delirious, the permit would be voided and we would remove the substance from the house. If it is practitioner administration, we are also, obviously, testing capacity right at the moment that we are administering the substance.

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

Q I will direct this question initially to Mr Greenwich. The issue of coercion has been a significant concern to many in the debate. In line with the New South Wales legislation, the Bill as proposed does not provide a definition of coercion, either explicitly or by reference to other legislation. Have you found that to pose a difficulty in your jurisdiction?

Alex Greenwich: In New South Wales, our legislation deals with and goes through coercion in quite some detail, with pathways to assess it. It deals specifically, for example, with a situation in which someone is under coercion from a person who is a beneficiary of their will; obviously, the person seeking voluntary assisted dying then becomes ineligible. In the space of coercion, that is a key part of the training for a doctor who will be a consulting or co-ordinating practitioner. We have made it a criminal offence in New South Wales, and indeed our board will report on it and on whether eligibility for access to voluntary assisted dying has been denied to someone. Our most recent report indicates that it has.

The overwhelming experience is that having voluntary assisted dying in place is itself a safeguard from coercion for people with a terminal illness. If someone wants to end their life quickly, voluntary assisted dying through a regulated process is not the option that they are going to take. Someone engaging in voluntary assisted dying will be assessed against coercion and against decision-making capacity, and will have to make sure it is an enduring decision.

When we talk about coercion, and the concern that people may currently have in the UK about people with a terminal illness feeling in any way coerced, the experience in New South Wales and elsewhere in Australia is that voluntary assisted dying has provided a safeguard in that regard. Our legislation, the training and the reporting is very clear on that.

[Danny Kruger (East Wiltshire) (Con)]

Q Can I have one minute with Dr Furst and one minute with Mr Greenwich? Dr Furst, I have had a look at the reports of the South Australia Voluntary Assisted Dying Review Board, and I can find no data on referrals for additional assessments of eligibility or decision-making capacity, or reasons why people were considered ineligible. There is no provision for reporting on complications, the time between the administration of the drugs and loss of consciousness, or the time between the administration of the drugs and death, and as we have heard there is no requirement for a doctor to be present. I do not understand how you can say that there is no evidence of coercion, issues around capacity or complications at the death, because you clearly do not collect the evidence on those things.

Dr Furst: I do not think that is the case. We are seeking out from relatives—within a month, normally—around any complications. As I said, we are also informally speaking to the nurse practitioners who are on site, but I do not think that that has been published as part of our state report. In terms of coercion, I would say that it is much more likely that patients are being coerced into invasive and intensive treatments, like cancer treatments such as chemotherapy, than being coerced into voluntary assisted dying.

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

Neil Shastri-Hurst Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Sarah Green (Chesham and Amersham) (LD)]

Q Dr Ward, I am keen to hear about your work on the Bill in the Scottish Parliament and about how best practice in other jurisdictions has informed the legislation that is currently going through Holyrood. How has it influenced and informed that draft?

Dr Ward: I was the adviser on the previous Bill in Scotland as well, under Margo MacDonald MSP and Patrick Harvie MSP. That was in session 4 of our Parliament; we then did not have a Bill in session 5, which is when we set up things like the cross-party working group on end-of-life choices and I did the PhD. Luckily, we saw a domino effect internationally in session 5; there were various jurisdictions legislating for it. When we came to draft this legislation in 2021, in session 6 of the Parliament, we had decades of data that we had not had when Margo made her first attempt back in 2010.

With the Assisted Dying for Terminally Ill Adults (Scotland) Bill, we have been working with international experts since 2021, and we have had various consultation processes. It is currently with the Health Committee of the Scottish Parliament. We set up a medical advisory group, chaired by Dr Sandesh Gulhane MSP: a group of almost a dozen practitioners in palliative care, mental health experts, geriatricians and other interested stakeholders. It produced a report for us on the medicinal aspects of the Bill.

That has been a four-year process. I understand that concerns have been voiced in this Committee that things have proceeded at pace, but I would argue that you are not pioneers. There is 20 or 30 years’ worth of data, which we have drawn on in Scotland, and there is four years’ worth of work in Scotland that this Committee and this Parliament could look to.

I would also make the point that the data is peer-reviewed and evidence-based. You really have to trust your international colleagues. The data is from Government bodies, from Health Departments, from independent academic peer-reviewed work and from independent review boards. We are now looking at fact rather than at falsehoods or concerns, as we were back in 2010.

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

Q Clause 9(3)(b) would permit an assessing clinician to refer to a psychiatrist if they have concerns about the assessment of capacity. Some have suggested that in fact all patients who are seeking a voluntary assisted death should be assessed by a psychiatrist. Professor Owen, in terms of workforce capability and capacity, is it reasonably practicable to have a consultant psychiatrist assessing each and every one of these patients?

Professor Owen: I think the answer to that is “Probably not,” given the current workforce. Another relevant point is that even if you were to insert into the Bill a very clear requirement for a consultant psychiatrist to be involved if there were concerns about mental health, what would happen in practice would be very different. You can see this in Oregon, whose law has a requirement for, essentially, a psychiatric referral in the case of mental health concern. Those referrals basically occur in less than 5% of cases; I think it is similar in California. Even if you put it in law, there is the question whether it will happen in practice. On the data, it does not. I think that that is a relevant consideration.

[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.

--- Later in debate ---

[Jack Abbott]

Q Professor Preston, you have extensive research into palliative and end-of-life care. It would be really helpful for the Committee if you could describe some of the underlying motivations about why people come to the decisions they do when choosing end-of-life care, and how you feel assisted dying would sit as an available option for those making those decisions, if it was available.

Professor Preston: The decision to go into palliative care is often made more by a clinical team, recommending that there be changes in the goals of care and what we are to aiming do. There are two big European studies looking at that at the moment, in chronic obstructive pulmonary disease and cancer. It is about trying to get triggers so that those changes in care can happen, because people cannot make decisions unless they are informed and they are aware.

Equally, when it comes to assisted dying, we have done interviews with bereaved families and healthcare workers in the United States, the Netherlands and Switzerland, and also with British families who access assisted dying through Dignitas. We hear from the family members that it is something they have really thought about for a long time. It might come to a crunch point where they know they are potentially going to lose capacity, they are potentially going to lose the abilities that are important to them—although for someone else, losing them may not be an issue.

That is when people start to seek help. They usually first seek help from one or two family members. There is often secrecy around that, because you do not want everyone talking about it. It is quite exhausting to talk about. It is a decision you have made. Then they seek help from healthcare professionals, and that is where they get a varied response depending on who they access. It is a bit of a lottery, because it only a minority of doctors will be willing to do this. That is where the challenge comes in.

[Dr Shastri-Hurst]

Q Professor Preston, in your written submission, you effectively propose reversing the presumption of capacity that is set out in the Mental Capacity Act. Could you go into a little more detail about that and the reasons behind that proposal?

Professor Preston: The submission was with my colleague, Professor Suzanne Ost, who is a professor of law, and that very much came from Suzanne.

I think the aim is to have that bit of extra concern, so that we do not presume capacity, but instead almost presume that there is not capacity. It would be a bit like if you go to A&E with a child and they have a fracture. The presumption there is to ask, “How did this happen?” and “Do we need to rule anything out?”, rather than just assuming “Well, they have just fallen over” and that things are exactly as said. There is an element of that, where we are not presuming capacity, but are actually going into it and switching it around within the training to ask, “Do they have capacity?”. I think that would be a change within the Mental Capacity Act.

[Lewis Atkinson]

Q Dr Richards, in the light of your research, could you say a little bit more about the weight that individuals dying place on the importance of autonomy and how that is weighed up against other considerations around safeguarding and so on?

Dr Richards: There are two things that I would like to say about this. The first is that it is individually specific, which probably will not come as a shock to you. The evidence shows that the people who request assisted dying are people who have a particular preference for control in their life, and they have had this preference across their life, so it is part of their identity. In that sense, it is a personal preference as opposed to a deficit in palliative care, which is what we hear a lot about.

The second thing is that, with regards to autonomy, proponents of assisted dying are very keen to emphasise that this is an autonomous decision, which it is, and would have to be by virtue of the law. However, that does not mean that families, loved ones and close social relations are not really embedded in that decision making. It is important to think of autonomy as relational rather than as an isolated making a decision not in relation to others. It is also important to think about the impacts on the family when you are thinking about the guidelines that would go along with any legislation.

--- Later in debate ---

[Kim Leadbeater]

Q I think you have answered it, but it was whether there was any specific detail about the Human Tissue Authority, how it operates and what that looks like.

Dr Price: I do not have lots of individual experience with that group, because I do not work within a specific service. But it is an example of a model that is in operation, and hopefully I have described the sorts of characteristics and why they are there.

[Dr Shastri-Hurst]

Q My question is directed to Dr Mulholland. Thank you to the Royal College of General Practitioners for the helpful written evidence. I want to pick up on something in it, which is summarised in paragraph 6 but gone into in more detail in paragraph 7, and that is around the refusal of practitioners to engage in the assisted dying process. I note the wording that has been used by the Royal College, which is that GPs and any other healthcare professionals can refuse “on any ground”. That is distinct from the Abortion Act 1967, which in section 4(1) sets out that it can be a conscientious objection. Can you explain why you have decided to take what appears to be a broader expansion of that definition, and why you have chosen that particular wording?

Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.

In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.

[Naz Shah]

Q My question is to Dr Price. We heard yesterday from Professor House and this afternoon from Professor Owen, who were talking about capacity and coercion. They also talked about how different people’s life experiences impact their ability and their state of mind, and the lack of research or evidence in that area—the courts are grappling with those issues at the moment. Is there any evidence about the effect on patients’ mental health when they have a diagnosis of a terminal or serious physical illness?

Dr Price: There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.

There are a number of associations other than depression with a wish to hasten death, and they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.

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

Neil Shastri-Hurst Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Dr Tidball]

I will make some progress.

The concept set out by the hon. Member for Richmond Park is the bare bones of what is needed in the complex decision making required across various stages of the Bill. In such decision making, the MCA has a wide and well-used toolkit to determine capacity. That leads to my third point. The Mental Capacity Act has been applied and litigated in our court system over the past 20 years. The chief medical officer, Professor Sir Chris Whitty, said in his evidence that the Act

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]

He continued later:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 36, Q14.]

I do not see sufficient clarity in the hon. Lady’s concept as set out in the amendment.

At a later evidence session, Yogi Amin, a solicitor and partner at Irwin Mitchell, augmented Sir Chris Whitty’s argument by saying:

“I wholly recommend and support the idea…to defer to the Mental Capacity Act for capacity assessments. I have been working in this area for over 20 years, before and after the Mental Capacity Act came in, and I have done cases all the way up to the Supreme Court, as well as day-to-day different cases around the country. It is well understood how capacity assessments are done, and it is ingrained into the practice of practitioners generally and of legal practitioners in the courts.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]

He continued:

“It is a well settled and understood approach to the law, and producing a new one would throw up a whole new conundrum, where people would be questioning how to approach it, etc. It is not broken—it works well.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]

Finally, for further clarity, I will vote against the amendment because of the ableist assumption in both language and concept. Ableist language assumes that disabled people are inferior to non-disabled people and perpetuates deficit discourses about such groups. I believe that this does not take the approach that we see in the paradigm of the Mental Capacity Act, which puts disabled people’s choices, autonomy and control over their choices at the heart of this legislation.

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

I thank the hon. Member for Richmond Park for tabling the amendments. Fundamentally, I do not agree with them, but I am grateful for her good intentions. I understand the concerns that she has raised, and she makes an eloquent argument, but I fundamentally disagree.

In my view, the amendments would only lead to abandoning the well-established principles codified within the Mental Capacity Act. They would introduce a degree of woolliness and legal uncertainty by introducing of a new term that is, as yet, undefined. That would make the operability of the Bill so much harder and would move us away from the Mental Capacity Act, which has a heritage of some 20 years and is already well established in the use of advance directives around organ transplantation, the withdrawal of treatment and the decision to undergo major operations that can have life-changing or life-limiting consequences.

[Danny Kruger]

My hon. Friend says that the term “ability” is not yet defined, but it is set out quite clearly in new clause 1, tabled by the hon. Member for Richmond Park. It simply says:

“The person is to be considered as having the ability to make a decision to request assistance to end their life if they can fully understand, use and weigh the relevant information”.

It uses the language of the Mental Capacity Act on understanding and weighing information. The key distinction is that it does not allow for impaired judgment; it requires somebody fully to understand the information in front of them. It is very straightforward, and I do not think that it would be difficult to apply. Does my hon. Friend recognise that the terms are pretty clearly laid out?

[Dr Shastri-Hurst]

My hon. Friend makes incisive points clearly and concisely, as always, but I cannot agree. This is a short clause that is dealing with a hugely complicated issue that is presently codified within the Mental Capacity Act, which runs to some 183 pages. I do not think that it is as simple as saying that the new clause deals with the issue.

There is also the two-stage test, which determines both the functional ability to make the decision and whether that decision is impaired in any way. It would be an oversimplification to suggest that the provision as drafted would deal with those issues in a satisfactory way that would provide confidence not only—although most importantly—to those who are making a decision around an assisted death, but to the medical practitioners who are part of the process and the courts, which will have to grapple with the issues that will inevitably arise from a new definition.

[Sean Woodcock]

The Royal College of Psychiatrists highlights that a person’s capacity can change and is decision-specific. It therefore says that the Mental Capacity Act is not suitable for the Bill. What is the hon. Member’s response?

--- Later in debate ---

[Dr Shastri-Hurst]

The hon. Member is absolutely right that capacity can change. It is an evolving piece: someone’s capacity at one point in time will not necessarily be the same as their capacity on a future or a previous date. However, the whole purpose of the Bill is to put a series of mechanisms in place that assess capacity to ensure a robust decision-making process.

I should also mention that the Mental Capacity Act allows the capability of individuals to make an advance directive. Where they have capacity at a point in time to make a decision for a future date, capacity can be inferred at that future date for that decision. That is acknowledged within the 2005 Act.

[Kit Malthouse]

I have to confess that I am a little confused by the evidence to which my hon. Friend refers. Can he confirm that it is perfectly possible for me to be diagnosed with a terminal disease and make an advance directive, which may apply in three months’ time, that in those circumstances I would decline treatment and would wish to die at that point? The Mental Capacity Act is used to assess me in making that advance directive, having had my terminal diagnosis. If it is good for that decision, I struggle to understand why it would not be good for a similar decision to end my life in similar circumstances.

[Dr Shastri-Hurst]

As always, my right hon. Friend makes a very good point. The Mental Capacity Act allows for advance directives on a whole variety of choices, including withdrawal of treatment, decisions on care or financial elements, and decisions on having treatment as opposed to not having treatment. It creates that ability and it is deemed robust enough for those purposes. It must therefore follow that it is robust enough for the purposes of the Bill.

[Sarah Olney]

I just want to probe the hon. Member on the capacity to make a future directive. Is he saying that, under the terms of the Bill as drafted and its reference to the Mental Capacity Act, it would be possible to say, “I may not be eligible now—I may not even be suffering from a terminal illness—but at some future point, because I have capacity today to make this decision, I should like to choose assisted dying”? Would that decision then be honoured at that future date, without any further intervention or assessment?

[Dr Shastri-Hurst]

The hon. Member makes an interesting point, which I had already considered; in fact, I have tabled a new clause that would address it. It is not grouped with the amendments now before the Committee, but I will touch on it, if I may.

There is an argument that, if an individual with an advance directive has gone through the two-stage test in the Bill and then loses capacity, the advance directive should hold weight. My new clause 6 would deal with that point. Sections 27 to 29 of the Mental Capacity Act deal with exclusions from advance directives, including issues around voting rights, marriage rights and Mental Health Act implications. There may be a mechanism, for example, to exclude an advance directive that deals with assisted death, either through the Bill or through an amendment to the Mental Capacity Act. But I do not disagree with the hon. Lady; she raises an interesting point.

[Danny Kruger]

Is my hon. Friend suggesting—I think his new clause makes it clear, and I think my right hon. Friend the Member for North West Hampshire is making the same point—that it is inappropriate for an advance directive to authorise an assisted death? The Mental Capacity Act authorises somebody to decline treatment at a future point, so my hon. Friend is acknowledging that there is a difference between the principle of declining treatment and the principle of requesting an assisted death. Given his new clause, I do not imagine that my hon. Friend thinks that we should have advance directives that authorise an assisted death. If he acknowledges that, he must recognise that there is a distinction between declining treatment and requesting an assisted death.

[Dr Shastri-Hurst]

My hon. Friend makes a valid point. I have concerns about public confidence in the Bill without that additional safeguard, as this is such a consequential decision, but of course any advance directive would be predicated on having gone through those two stages first before capacity is lost. I feel that on this occasion additional tightening is necessary so that the public can be confident that a robust process has been gone through.

The MCA is a tried and tested piece of legislation used by practitioners up and down the country. The hon. Member for Stroud uses it every day in his practice; I have to say that I did not, but I was not consenting patients for surgery every day. Every time I did so, however, I had those conversations. Capacity lies on a spectrum: if I am doing major abdominal surgery, the level of capacity required to make a decision will be much greater than if I am removing a small bump or lump on an arm.

As well as having been tried and tested by medical practitioners, the MCA has been tested in the courts, as the hon. Member for Penistone and Stocksbridge said. It has been right up to the highest court in this land, it has been robustly tested and it has been found to be good legislation. The risk we now face is that it will be replaced not only with a new legal concept, but with an entirely different process for assessing capacity in this setting. Although there may be good intentions to improve the system, that will only add to the folly of it and overcomplicate the issue.

[Kim Leadbeater]

I am sorry that it has taken me a while to find the relevant provision of the Bill. The discussion on the advance directive is a really interesting one, and I am glad that we are having it. Is the hon. Member reassured that clause 18(4) is very clear that on the day that assistance is provided to a patient, a doctor has to assess once again their capacity to make the decision to end their own life, check again that there is a clear, settled and informed wish to end their own life, and indeed check everything again on the day, including capacity? I believe that that will negate the issue around the advance directive.

[Dr Shastri-Hurst]

The hon. Member makes a reasonable point. I agree with her on many issues, but on this issue I have some reservations. Clause 18(4) says:

“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided…has capacity…has a clear, settled and informed wish to end their own life”.

Of course, under the wording of section 26(1) of the Mental Capacity Act, that decision can be made at an earlier time and deemed to have currency, once capacity has been lost, for its enactment at a later date. I think that there could be a minor tightening of the wording or reassurances from Government to address that, but it is an important point to raise and air.

[Naz Shah]

rose—

[Naz Shah]

I am just trying to understand what the hon. Member is communicating. Under the Bill, if somebody has anorexia, diabetes or kidney failure and has the capacity to make that decision because they meet the criteria for the capacity to refuse treatment, will that mean that they can decide to sign up to this option?

[Dr Shastri-Hurst]

The Bill is very clear in determining that it is for those who have a progressive illness, disease or medical condition that cannot be reversed by treatment. On my reading of the Bill, it excludes that category of individuals who choose not to engage with treatment that in ordinary circumstances would prevent the progression or deterioration of their condition. I therefore do not see it as analogous with the hon. Member’s scenario of someone who could have a long life expectancy if they had taken their treatment, but who chooses not to. That is not captured within the Bill, in my interpretation.

[Naz Shah]

I am struggling with this, because it is clear from the evidence from our witnesses that that is the case where somebody has anorexia, for example, and they make that choice. As has been referred to plenty of times in the context of the Bill, the Mental Capacity Act has been used, and is sufficiently used, for people to withdraw treatment. Personally, I think that that is a pretty false equivalence, because when a person’s life support machine is turned off, the decision is made not by the person receiving lifesaving treatment, but by their loved ones.

According to what we have heard this morning, if someone has the mental capacity to use the MCA to withdraw treatment for a condition, that will lead to a diagnosis of terminal illness. It could kill someone. If I refused to take insulin, and I was diabetic, I would have the mental capacity to say, “Actually, I’m not going to take this treatment, so can I make a decision?” I am just trying to check the hon. Gentleman’s understanding.

[Dr Shastri-Hurst]

With the greatest respect to the hon. Member, I think that she is conflating two issues. Someone can stop treatment under the MCA; over time, that will lead progressively to death, with some conditions—she gave the example of being a diabetic without insulin—but that would not be a terminal illness in reference to this Bill. The Bill is very clear that it is about an inevitable and progressive illness, disease, or medical condition that cannot be reversed by treatment. Diabetes, treated with insulin, is not a progressive condition that becomes a terminal diagnosis; it is terminal only by virtue of somebody refusing treatment, which therefore would not be captured within the Bill.

[Rebecca Paul]

I would like to understand why my hon. Friend thinks that diabetes could ever be considered reversible. It can be treated and managed, but surely we cannot turn back time.

[Dr Shastri-Hurst]

My hon. Friend makes a valid point—the Committee can see that I was an orthopaedic surgeon, not an endocrinologist. It is not necessarily a progressive condition; it is a condition that can be managed and maintained. It does not fall within the wording of the Bill. We are not talking about a condition that is inevitably progressive, and for which there is no treatment option available to pause, reverse or prevent its progression. We are talking about a relatively limited group of conditions that will inevitably lead to death when someone, for want of a less blunt phrase, has reached the end of the road in terms of their therapeutic treatment options.

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

rose—

[Sarah Olney]

rose—

[Dr Shastri-Hurst]

I give way to the hon. Member for Richmond Park.

[Sarah Olney]

I am conscious that the hon. Member for Ipswich sought to intervene before me, but may I press the hon. Member for Solihull West and Shirley slightly on his point? When I asked Professor Sir Chris Whitty during oral evidence whether there could ever be a defined list of conditions that he would define as terminal, he was very clear that there could not be. Someone may suffer from a range of conditions. Most people who develop cancer survive, so cancer is a terminal illness, but not for everybody.

The question of what is and is not a terminal illness is quite contested; it is not clearcut. As the hon. Member for Bradford West says, it is quite possible that diabetes could be a terminal illness if someone refuses treatment for it. I am not entirely clear why the hon. Member for Solihull West and Shirley is saying that it is clear from the legislation what is and is not a terminal illness. As we heard in oral evidence, it is not clear.

[The Chair]

Order. I remind Members that the Committee will discuss terminal illnesses, and extending the list relating to terminal illnesses, under a later clause. Let us remain in scope this morning and continue the debate on the amendments before the Committee.

[Dr Shastri-Hurst]

I will keep my answer very brief by saying that I will return to hon. Lady’s point when we come to the clause on terminal illness, when perhaps I can elucidate, improve and work on my responses in a way that is conducive to understanding.

[Sarah Olney]

I look forward to it.

[Dr Shastri-Hurst]

I am aware that the hon. Member for Ipswich is waiting to intervene.

--- Later in debate ---

[Dr Shastri-Hurst]

The hon. Member is right: there is a huge spectrum of patients when dealing with these complex issues, and it would be absolute nonsense to arbitrarily say that anybody with depression is unable to make an informed decision on any issue. There are individuals who have mild depression—indeed, I suspect that most people with a terminal diagnosis would have some form of depression or reactive disorder, whether formally diagnosed or not, because of their circumstances. That does not mean that they are unable to make a rational, informed decision; we have to look at each patient individually. The Act is a tried and tested piece of legislation that doctors up and down the country use every day. Doctors over the road in St Tommy’s will be using it at this very moment, and they are adept at knowing and sensing when they need to escalate, whether by getting the opinion of a psychologist or a psychiatrist, because they have concerns about underlying issues. The Act is a robust piece of legislation, and we should be using it to enhance this Bill, not introducing further complexity, which will only put us into a quagmire of uncertainty.

[Danny Kruger]

My hon. Friend does not want uncertainty, so perhaps he could answer this question very directly: would he be content to see somebody who is depressed, and indeed suicidal, successfully apply for an assisted death?

[Dr Shastri-Hurst]

My hon. Friend puts it with his usual candour. He asked a straight question, so I will give him a straight answer: I think there is a difference between somebody who is depressed and somebody who is depressed and suicidal. I have no personal moral objections if someone who has a terminal illness, who suffers from depression and who has capacity as set out through the two-stage test in the Mental Capacity Act, ultimately wishes to end their life because of their terminal diagnosis. If they are doing it because they are suicidal as a consequence of their depression, that is a different and distinct issue. We are talking about individuals who want to end their life because of their terminal diagnosis, not because of their mental disorder.

[Jake Richards]

I keep making the point that clause 9 adds a different element to this process. It says that, when undertaking the assessment, one of the two doctors

“may, if they have doubt as to…capacity…refer the person for assessment”

of their capacity by a psychiatrist. Does that reassure the hon. Member that there is a further layer of safeguards in this area?

[Dr Shastri-Hurst]

That is one of the additional safeguards in the Bill. This Bill has more in-built safeguards than any similar piece of legislation across the world. I think the hon. Gentleman makes a valid point: when a doctor has concerns about somebody’s mental state, they can escalate the case and seek further, specialist opinion.

[Kim Leadbeater]

Will the hon. Gentleman give way?

[Dr Shastri-Hurst]

I will make some progress, if I may, because I think I have indulged your patience for far too long, Ms McVey.

I am cautious about introducing this new test. I may not have persuaded everyone, but I have set out my reasons. We risk making the system overcomplicated. We would move away from the well-established mechanism under the Mental Capacity Act and into tiger country, with untried and untested systems that the courts have not considered, which will inevitably lead to challenge. There is no need to do that, because we already have robust mechanisms in place and doing so will merely lead to ambiguity and potential complications.

This is not me reaching this conclusion in isolation. Of course, there will always be voices on different sides of the debate, and we can frame the evidence we have heard to favour one set of arguments over another. However, I am significantly persuaded by the chief medical officer, given his wide experience as not just a clinician but a public policymaker. In his evidence to the Committee on 28 January, he said:

“It is not clear to me what problem people are trying to solve by doing that,”

—he means moving away from the Mental Capacity Act—

“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.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q14.]

It is that foundation that we are building on, and it is central to how these things operate in practice.

Although I understand the position of the hon. Member for Richmond Park, and I have a degree of sympathy with those who support the amendments, I invite them to reflect, in the time we have left for this debate, on whether the amendments achieve their stated aim. Do they make the Bill better or do they make it more complicated and convoluted? I say that they make it more convoluted and that, despite the best of intentions, they should not be supported.

[Daniel Francis]

My hon. Friend the Member for Penistone and Stocksbridge knows I am an ally on many of these issues, but I will humbly disagree with her on some matters. I am not a lawyer or a doctor, but like many people here I speak from lived experience. I speak as the parent of a learning-disabled child, so I see the kinds of decisions that have to be made day to day, and the kinds of arguments and conversations that have to be had with people who presume that my child has more or less capacity than she has. Believe me, that is a constant, daily battle for me and my wife.

My daughter has 12 words and a severe sight impairment, which makes it very difficult for her to make some of her decisions, as well as other complexities—predominantly her cerebral palsy, which caused a brain injury at birth. Therefore, in my own way, although I am not a lawyer or a doctor, I have become a bit of an expert on some of the capacity issues that people encounter day by day. This morning, as I do most mornings, I read to her the three choices for her breakfast. I give her a bit of time to think about them and then I repeat them. We get yes or no to those three choices, and that is the choice she makes. Because of her severe sight impairment, when I put those three options in front of her, I have to lift them up in front of my face so that she can see them; if I put them much lower down, she would not be able to see them and make a choice. She would be able to make the choice through pointing if it was within a certain range.

I have doctors calling my wife and me all the time, asking to have a conversation with my daughter, despite their having read the notes saying that she is an 11-year-old with 12 words and a severe sight impairment. I therefore query—I will refer to some of the oral evidence in a moment—how well some aspects of the Mental Capacity Act are currently being carried out. Equally, I deal with people who suggest that she has a greater level of capacity than she does.

I accept—I have had this conversation with the hon. Member for Spen Valley on a number of occasions—that this legislation would not be applicable to my daughter. However, we heard in evidence from Mencap that the vast majority of people with learning disabilities in this country are not in the same position. They are living their day-to-day lives, living in supported accommodation and making the kinds of decision we have discussed in this debate, such as buying coffee and going to the bank.

As a result of my 20 years as a councillor, and in the last 11 years since our children were born, I have become involved with a number of local disability charities, and I know the decisions that people make when their child is at that transition age. They are trying to understand the complexity of taking a power of attorney for a child, as well as other decision-making issues. I spend a lot of time with parents who do not put those measures in place, because they do not understand the complexity in terms of age. We could therefore have a young adult relying on doctors who do not know them and on a judge—I have not seen an amendment on that issue, so I am still talking about a judge—to make a decision about capacity.

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

Neil Shastri-Hurst Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

That is exactly right. As I have mentioned, I am not bringing in the concept of encouragement; it is already in the law and currently an offence. I am putting forward this logical amendment in order for the Bill to deal with that. If we do not do that, we have not circled the wagons.

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

I have no doubt that my hon. Friend speaks to the amendment with very good intentions due to genuine concerns about the safeguards. We have talked a lot about coercion. Clause 1(2)(b) sets out a requirement that the person,

“has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person into making it.”

“Pressured” is an important word. If we look at the case law, there are the comments of Lord Nicholls in the case of Royal Bank of Scotland plc v. Etridge (No. 2) in 2002. He looked at two components of the concept of undue influence. There are acts of improper pressure or coercion, such as unlawful threats, which fit with the coercion element of the Bill as drafted. There are also relationships where one has acquired over another a measure of influence or ascendency, of which the ascendent person takes unfair advantage without any specific acts of coercion. Could my hon. Friend set out why she thinks “unduly influence” would add something beyond what “pressured” already does in the Bill?

[Rebecca Paul]

My hon. Friend is very knowledgeable about these things and is well qualified on the legal side. I value his contributions on this matter. The reason I want to include “unduly influence” is because it deals with those more subtle forms of coercion. Arguably, it could be included in “coerced or pressured”, but by including “unduly influence” in the Bill it becomes more explicit that a clinician has to be looking for it. In the absence of the language, clinicians will not be required to look for those more subtle forms of influence.

The provision is something that is included in the assisted dying laws of other jurisdictions. We have the opportunity here to learn and benefit from jurisdictions that have already implemented it. We heard various witnesses give us very useful evidence during the sessions. For example, California includes “undue influence” in the law. We should recognise that there is value in including it here. It is a well-established legal term that is used in myriad situations, so it is relevant that we include it.

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

Neil Shastri-Hurst Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Naz Shah]

I think that the hon. Member’s intervention responds to some of the points of the right hon. Member for North West Hampshire.

We have heard a lot about the equivalence of endings versus decisions. The example given earlier, of somebody pulling the plug because they did not want treatment any more, happens in very few cases. From my experience of working in the NHS and with disabled people, when people are at the end of life, their cases sometimes do end up in court in front of a judge. That may be because there is a difference of opinion—be it medical, between the family, to do with capacity, or whatever the issue is. We are removing that. My understanding is that the promoter of the Bill is removing the need for the judge and is proposing a panel, which is what I read in The Guardian earlier.

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

I wonder whether the hon. Lady can help me with an area of her argument that I am conflicted by. I have heard the points made by my hon. Friend the Member for East Wiltshire, drawing the distinction between those who refuse treatment for a condition that is then terminal and those actively seeking assistance in ending their life. There is a third group who choose to refuse food and nutrition. That is not a treatment in the conventional sense, to combat a disease process, that is normal sustenance that would keep someone alive. Given that the MCA applies to that decision and someone’s ability to refuse on that basis, how does that interplay with the amendment as proposed?

[Naz Shah]

I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.

--- Later in debate ---

[Naz Shah]

My understanding, which comes from Chelsea Roff, was that that happened specifically in places such as Oregon and California, but I am happy to revisit that. Coming back to the point, we must ensure that people with an eating disorder such as anorexia or a mental health condition will be excluded from the Bill. That will be my second amendment. I do not know if that answers the question.

[Dr Shastri-Hurst]

It may well have been the way that I phrased it, but the point I was seeking to make was that the Mental Capacity Act, as it currently operates, can be used for those patients who choose to refuse food and water. My view would be that that is a distinct group of people who are refusing active treatment. Given the hon. Lady’s distinction between those who refuse treatment in the conventional sense and those who are seeking assisted dying and her view that for the latter group the MCA is not the appropriate mechanism, is she saying that for that group of individuals who refuse food and water—effectively choosing to end their life through starvation—the MCA is not an appropriate mechanism to assess their capacity?

[Naz Shah]

I thank the hon. Member for his intervention, but we are not here legislating on anorexia; we are here legislating on the option of assisted death. I am trying to understand where he is going with that argument. It genuinely does not make sense to me.

--- Later in debate ---

[Naz Shah]

I am still having that debate in my head, and I am not convinced. I will not digress—I will come to the point—but there is a conversation about whether it is “treatment”, “assisted suicide” or “assisted death”. Those terms have been bandied about. I genuinely think that, ultimately, we have to use the word “suicide” because we are amending the Suicide Act 1961. I appreciate the context in which the promoter of the Bill puts it forward, but the truth is that it is about taking one’s life, so that is how I respond to that question.

To come back to the amendments tabled by the hon. Member for East Wiltshire, the reason why I will support them is that I have way too much experience of people in vulnerable positions, and I have a lifetime of experience of seeing what happens. I do think there are options when somebody has a diagnosis of terminal illness. The prison systems are set up to be able to give them compassionate leave and to explore other avenues. Once they are outside that system, they can access support and have their vulnerability reduced.

[Dr Shastri-Hurst]

Will the hon. Lady help me to understand her position? Is it a fundamental disagreement with any prisoner having access to assisted dying, or is it a fundamental issue with completing the final act, as set out in clause 18, while being a prisoner? For example, the hon. Lady touched on early release on compassionate grounds. Under those circumstances, there may be a prisoner who has been given a six-month diagnosis, and their early release may not be until the last couple of weeks of their life. Should they be deprived of going through the process and the assessment, albeit not enacting the final act until they have been released?

[Naz Shah]

Yes, I think there should be a deprivation of that final act, because there are vulnerabilities with that prisoner while they are inside a prison. What they need is not an option of assisted death at that point. That speaks to the amendment that I tabled, which is about making sure that we do not have the conversation in the first four weeks in any case, because a diagnosis of terminal illness affects people’s mental capacity and mental health. We know that: we have heard it from the psychiatrists. It is common sense; it does not take a genius to work it out.

We know that people in prison have additional vulnerabilities. We are having a debate about the issue of capacity, which we have clearly not agreed on. A person-centred care package needs to be about supporting the person, removing vulnerabilities, giving autonomy, and offering choices around accessing palliative care and medication, so that they are in a much stronger position to make an informed choice.