Simon Opher MP: speeches

Speeches

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q I have been fascinated by this discussion, so thank you all. It strikes me that we have spent a number of days looking at the other end of this, if you like—coercion and capacity and that sort of thing—but I am concerned that we had a judge with Parkinson’s who would not be allowed through this, like your sister with MND. I just think we should consider as a Committee whether we need to make any amendments on these things, and also on self-administration. I wondered whether you thought we should widen the Act. I presume you have read some of it, at least. Pat Malone: As I mentioned to Mr Kruger, I am loath to meddle in any way with the Bill. I think that as it is the Bill is the best we can do at this time.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Certainly.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q Another hon. Member has asked my question, but I have another. We heard yesterday about domestic violence and elder abuse. Does the legislation need to be tightened around that type of area—the coercion of older people into taking their lives early, potentially for financial benefit? Dr Ward: That picks up on the previous question, which my learned colleagues answered. Good legislation sets a baseline and a legal framework. You can take a kitchen sink approach to legislation, and you will end up with something that is completely unworkable in practice. There is an awful lot that guidance needs to pick up and should pick up. I understand that only certain things are appropriate for secondary legislation, but you should not try to legislate for every eventuality in a Bill. On my reading of the Bill, there is nothing that prevents a multidisciplinary team from being involved with this. The Bill sets the baseline: there must be a minimum of two doctors. What happens in practice—and this should be picked up in guidance and secondary legislation—should be developed in conjunction with professional bodies: clinicians, allied health and social work. They are the appropriate people to develop that guidance, not legislators. I would say, “Be cautious about how much you put on the face of the Bill, because you might end up with something that is unworkable.”

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  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?

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q I would like to go back to the point about depression, because it is common. In the general population, 20% are on antidepressants—on SSRIs. GPs diagnose the vast majority of depressions. Dr Mulholland, what are your thoughts on whether checking for demonstrable depression should be a standard part of the assessment before you refer people into the service? The idea of getting a psychiatrist who wanted assisted dying to see every case, given how difficult it is to see a psychiatrist in the NHS at present, would really limit the service. Dr Mulholland: We see a lot of people with mood disorders of different types and of different severities. Many people with depression who are treated with antidepressants carry out full-functioning jobs and lives because of the treatment that they have and because their depression is not of that severity. If someone had very severe depression and we were accessing our psychiatric colleagues, that would be a different decision, and perhaps it is not something that would happen at that point. Most people with depression, anxiety and other mental health problems would have capacity, because we would presume it under the Mental Capacity Act, so it is not necessarily an obstruction to people being referred for anything.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  I think that my question has been covered by my hon. Friend the Member for Bexleyheath and Crayford. I just wanted to be sure that we were secure if the doctor was not in the room, but that has been answered.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  It was clause 26, sorry. Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted. There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents. The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential. The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests. Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision. On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  May I ask a further question, Mrs Harris?

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option? Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.” He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q Liz, you spoke about excellent palliative care. What were the reasons, do you think, that your brother wanted to end his life? It did not sound as though he was particularly depressed. Liz Reed: No, he absolutely was not depressed.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Now you’re asking. Let me check. Dr Ward: In the interests of time, let me say that I moved to Queensland a year and a half ago, as I mentioned at the beginning, and took up an academic fellowship at the Australian Centre for Health Law Research. That university was tasked by the Government states of Victoria, Western Australia and Queensland with developing the training for assisted dying implementation there. The modules in that training very specifically go through coercion, how you detect coercion, how you discuss it with patients and cultural considerations around it. They cover everything from capacity to the administration of drugs. They are very robust training modules that healthcare practitioners must satisfy at a pass rate of 90%. We rely heavily on the training to make sure that coercion protection is in place.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q I would just like to ask Claire about medication—not specifically the drugs and everything, but clause 18, “Provision of assistance”. We have heard that in Australia the medication is left with the patient, whereas under this legislation the co-ordinating doctor brings the medication to the house or the place where the patient wants to end their life. Do you feel, having seen the Bill, that that is safe, or do we need to amend it in any way? Claire Williams: Again, those safeguards would need to be in place. There would be concerns if they were not actually giving the drug to the patient, and seeing the patient take the medication. Yes, robust safeguards would need to be in place.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q Conveniently, my question follows on from that. On our first day of evidence, we had Chris Whitty, the chief medical officer, saying that when you are assessing capacity, the vast majority either clearly have capacity or clearly do not, and there is a small section in the middle. Michael, would you say that a role of a GP would be to inform those definite yeses and definite noes, and then they would perhaps not have the skills for the intermediate ones? I am just suggesting that. Dr Mulholland: As GPs, we can assess capacity. In this situation, the college’s position would be that we feel the GP should not be part of the assisted dying service, so we would see a standalone service that we can signpost our patients to. The GP role may go on to a different route afterwards, and it may be part of other things with palliative care and looking after the families. We think that some GPs may want to be involved and take that step, but we know from our membership surveys that we have had at least 40% of members in the past who would absolutely not want to have any part in that. Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient. We could discuss that these things exist, but we would not be doing that capacity assessment. Obviously, to give patients information about what they are going to, as you know, we would assess their capacity to take that information in, retain it and do the right thing with it for them. We would be doing that level of capacity assessment, but not further on in the process, where you are assessing whether a patient is able to make a final decision. I think Chris Whitty referred to the various levels of capacity. As the decision gets more difficult and complex, you want a greater understanding with the patient that they really know the implications of what is going on, and we just would not be doing that in general practice.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Sixth sitting) · Hansard source

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  Q 265 I would like to direct this question to Dr Furst. There has been some concern in this country about the efficacy of end-of-life medications. Could you share some of your experience in Australia about how effective they are and any problems you have encountered? Dr Furst: The medications are completely effective. I have not experienced any failures. One of the things I feel quite comfortable reassuring my patients and their families is that this medication absolutely works. In terms of oral administration—the default option in South Australia unless the patient cannot consume the medication or has problems with absorption—it puts them to sleep within a couple of minutes. They are heavily sedated, as if undergoing an anaesthetic, and then death ensures—that is, the heart stops and respiration stops. For about 95% of patients, that happens within about half an hour. There is a small, small percentage of patients who will continue to be sedated but circulation will not cease for some hours after that. We warn patients and, more importantly, their families that this may be the case, and that is an enzymatic issue. The medication it is highly effective. Personally, I have not had any experience where patients have had complications—vomiting, respiratory distress or any other concerns. Certainly in South Australia, those have not been issues that have been reported to us. I think there have been a couple of cases of vomiting elsewhere, but the medication has worked in all cases, as far as I am aware, around Australia as well, so this has not been an issue. IV administration is also highly effective. By the time the medication has been administered completely, the patient is deceased. This works—it is peaceful. Patients say to me, “I want to go to sleep and not wake up,” and that is absolutely what happens. It is a very peaceful death.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Sixth sitting) · Hansard source

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  Q Just to confirm—you have not had any failures of treatment, as far as you are aware? Dr Furst: There have been no failures of treatment in South Australia, as far as I am aware. I am not aware of any other particular ones around the country that have been heavily broadcast to us.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q It seems clear from an expert in European law that the human rights convention is covered by this legislation, so we have got some very good advice there. I would just like to confirm that, if we could, Dr Graham. Also, to all of you: could we have some positive things that we could put in the Bill to make it safer? We have been talking about the Bill but this is a practical session where we need to improve the Bill. First of all to Dr Graham.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  And do they—

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q First, I work as a GP with old people—I look after a nursing home— and I have to do adult safeguarding training every year. Secondly, more than 90% of psychological assessments are done in primary care. Professor Esmail, do you think that GPs are capable of spotting coercion and doing a psychological assessment? Professor Esmail: Coercion is a difficult one, but absolutely, with all the provisos people have talked about and how sometimes it is hidden and all that sort of stuff, but I think we are always thinking about it —absolutely. Even when someone comes in and, as I said, asks for lasting power of attorney, it is definitely at the forefront of my mind as to who is making them do this, why and so on. For psychological assessment, yes, as you said— but not only psychological assessment. Something like 52% of people choose to die at home, looked after by their GP, so in terms of palliation—I mean, I know people talk about how terrible things are, but it is also provided very well for the vast majority of people, who do not end up in the situations that people have been talking about. We do need to have perspective. Yes, I absolutely think GPs have the skills to make those assessments and are doing them all the time, in a way. We now work as multidisciplinary teams, so we have access to a lot more information and expertise within our wider team to help us with those situations. The team is in a way very well placed for that, yes.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  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.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Q Could you briefly run through the patient pathway? Where does the patient first arrive in the healthcare setting? Who are the two doctors? Indeed, who provides assistance at the end of life? Dr McLaren: Again, each of our states, as well as the Australian Capital Territory, has different legislation and therefore different processes. In broad speaking terms, say in Victoria, for example, a patient will express their wish to engage in voluntary assisted dying independently, and often they are connected to the state-wide patient navigator service, which will connect them with a doctor to receive that patient’s first request and become their co-ordinating medical practitioner. That doctor will then conduct the patient’s co-ordinating assessment and determine whether they believe the patient is eligible or ineligible. If the patient is eligible, the doctor will refer them on to a consulting doctor, or a doctor who acts as the consulting doctor, for a consulting assessment. If that process is also approved and the patient is found eligible, they meet again with the co-ordinating medical practitioner to make a written application to engage in voluntary assisted dying. That process then goes to our review board, to ensure that it is compliant with the legislation, before we can apply for a permit to prescribe the medication. The permits are specific to our state; many other states, such as Dr Fellingham’s, do not require a specific permit for individual prescription. The permit will come back within three days, and then we write a prescription, which goes to our centralised pharmacy service. The pharmacy will wait for the patient or the contact person to contact the pharmacy and organise the delivery or dispensing of the medication. In Victoria, self-administered oral medication will be dispensed to the patient, and that is then their property; they may use it immediately or never use it—that is completely up to them. They do not require medical attendance at that time, although I have provided that on many occasions, sitting with a patient and their family as the patient has taken their medication and died. If the medication is not used, the contact person nominated by the patient is legally required to return the medication to the pharmacy. If the patient is unable to ingest or digest oral medication, we can apply for practitioner administration, which I believe your Bill does not currently provide for. This authorises a co-ordinating medical practitioner to administer the medication, either via a percutaneous endoscopic gastrostomy feeding tube or by other means, including intravenously, to the patient to bring about their death. I have certainly done that—I do not keep count, but I have engaged in that many a time.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Actually, my question has already been asked. Chelsea Roff: May I respond briefly? I want to address the question. I know it is not your intention for eating disorders to be included in this Bill, and I am grateful for that. When I started our research, I thought, “We just need stronger safeguards.” That was where I began, and after looking at 33 jurisdictions around the world, I have real doubt about whether safeguards are enough; I know how difficult it is to put it on the page, and I am seeing it expand and be applied through interpretation. I disagree with Professor Shakespeare, respectfully, that diabetes is a reversible condition. You cannot go back in time and reverse that condition. I agree that you are doing this for a noble purpose, and there are members of my family that want this Bill to go through, and yet I emphasise to all of you on the Committee that the question before you is: could this Bill have knock-on effects for some of your most vulnerable constituents? How many deaths are you okay with? If the safeguards fail once, that is a human being who maybe, in a despairing moment, was handed a lethal medication instead of the care, the treatment and the help they needed. That is what we are talking about. You really have to get this right, because those people are depending on you.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Can I just confirm—

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q I am interested in the opt-out whereby ethically, doctors can opt out of taking the decision for patients. Would they then need to steer someone towards another doctor, or can they just simply refuse to do it? Professor Whitty: Duncan may wish to comment for nurses. For doctors, we should be very mindful of the fact that for some doctors, as for some citizens, this is a point of very strong principle indeed, therefore there will be a gradation of people feeling that they can personally be involved in it. I suspect that if they themselves did not feel able to do it—because of conscience or choice, or because they did not feel that they had the necessary skills—the great majority would have no problem referring on, but it might be an issue for some people. Personally, my view is that we should be able to have the range, provided that people are aware in general that, if one person cannot provide it and then does not wish to discuss it, there are alternative routes. But that really is a matter for Parliament and if Parliament says, “No, actually, that is unfair on the patient, because then the patient is having to go through an extra step,” that is an alternative and perfectly reasonable principle. Parliament is going to have to balance those two principles; that is not for me as a doctor. I just think that that range of opinion needs to be thought through when people are coming to that final parliamentary decision. Duncan Burton: If I could add to that, again, I think that bit about the wider workforce and how we would support them is really important. We have situations like this already. We have advice professionally around things such as abortions and working in embryo services and fertility, for example, so we need to make sure that the safeguards for our staff are really clear. As Chris has said, our staff will have a range of views and opinions on this, as will the wider public. So the work you do in creating this Bill is really important in terms of the advice that we give to people about signposting and having those conversations. Actually, our clinicians are having conversations every single day about the choices that people have at the end of their lives.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q I have a couple of points to make. First, clause 4(5) states that a “registered medical practitioner who is unwilling” to go forward with the assisted dying request “must, if requested…refer…to another registered medical practitioner”. Are you happy with that clause? Dr Green: No, we are not, because we know from our survey that some doctors feel very strongly about this. The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to. There is a particular problem with the word “referral”. Doctors would not be able to be obstructive; they have the same duties under good medical practice as they do, for example, with termination of pregnancy requests.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q In some legal medical situations, you need to be five years post training before you can have a view. Is that something you would have in both of these practitioners, or is that not necessary? Dr Green: We did not take a view on that. We thought that training and experience was more important.