Baroness Berridge
Main Page: Baroness Berridge (Conservative - Life peer)
Lord Winston (Lab)
I feel tempted to try to answer that very quickly. I too will be leaving the Committee before we get to a vote on this or at least some decision from the Minister about what the Minister is going to say. I have to say that this discussion about the cost of treatment is not a reasonable one. The noble Lord, Lord Stevens, did not discuss this in his speech, but I think the speech of the noble Lord, Lord Birt, is overwhelmingly important because it is about the notion of our sensitivity in this situation.
There are many people who go to the health service who do not get treatment. It is not always a treatment. For years, I was pioneering in vitro fertilisation, which was not successful for a very long time. We got 16 babies worldwide in the first four years. There are now millions of happy families as a result, many of them in this House some of the time. The people in this House who opposed in vitro fertilisation—believe me, there were many of them—would probably have refused to accept assisted dying too. The fact of the matter is that the health service develops. It is not static. It changes depending on what the need is. In vitro fertilisation, instead of being an orphan subject, is now a major treatment funded by the health service. Unfortunately, it should be more funded, but we are getting a lot of success doing it in the way we are, and we will increase that.
It is also fair to point out that there are medical treatments developing all the time in the health service, which are not funded at the time when they are developed. Take cancer treatments, which are extremely expensive, very often with the most expensive drugs. Of course, we have to deal with the internal market in the health service, but we persuade the people who understand the need for healthcare, are faced with patients and have to treat them in the best way—
Lord Winston (Lab)
I will not give way. I will answer at the end. I have almost finished what I have to say.
The fact of the matter is that this is not a true argument. There are many examples. In my practice, probably about 60% of the time when people came to my clinic, and it was always true even when IVF was successful, I refused them treatment. I refused to treat them, not because there was no money or we could not afford to treat them, but because I thought the treatment would increase their distress because it was so unlikely to be helpful.
When that happens to people, it is a kind of death within them, but they have the great advantage that they can mourn that death and overcome it by doing other things. Unfortunately, in this situation, when people are dying in the way they are, often horribly, there is something that we need to try to do purely out of compassion.
Baroness Coffey (Con)
I understand where my noble friend is going with that. I intend to come back to some aspects of this when we get into informed consent because I was somewhat struck by what the noble Lord, Lord Winston, said, about declining to give treatment because he wanted people to, in effect, accept that they were dying—I think that is what he said, although I had better go back and check that because I do not want to misquote him. I have seen that myself; I saw it with my mother when doctors just had not treated her, and then when it came to it, when it was near the end, we had to fight to avoid even having a DNR on the ambulance so that she could die at home in a place of her choice. That is true patient autonomy—I am not trying to override that.
In terms of thinking through some of what the noble Lord has put forward in his propositions, others have already reflected on the concerns about working days and whether that is practical. I would be grateful to hear from both the sponsor and the Ministers about what assessment they have made of these amendments. I am also concerned about proposed new subsection (2)(g) in Amendment 771, about providing
“publicly available information on assisted dying”.
How does that vary from what is considered advertising, which is explicitly ruled out in other parts of the Bill?
The key point of my amendments links to this almost becoming its own service within the NHS. Various clauses start to remove powers from the voluntary assisted dying commissioner. This service would start to appoint the panels, and at the moment it is taking up all the training, licensing and all those different things. It is my understanding that this does not happen in the NHS today. What we actually get, and what I propose with my amendments, is that, for a start, we have a separate regulator through the Care Quality Commission, and that the General Medical Council undertakes the roles that it does for other parts of what happens in the NHS today. If the noble Lord, Lord Birt, brings this back on Report then I hope he will think more carefully about how to make this practicable, because I hope the Minister will say it is simply not operable, even if well-intentioned in what the noble Lord is seeking to achieve.
The noble Lord, Lord Mawson, has just started talking about the East End of London. It is important that noble Lords consider carefully not just the evidence that has been given to this House but evidence outside about the real concerns of people from BAME communities. It is evident that people in those communities seem particularly worried about this, and that has been communicated directly to this House through witnesses. Instead of not trusting the NHS as it is today to give treatment, imagine, as you go in and are unsure, your already overworked GP saying, “Here you go; here’s some information. Someone can hold your hand”. I worry that too many people would stay away from the NHS when they desperately needed treatment in other aspects of their lives, whether in addressing prostate cancer or the other rare cancers that we debated in the Chamber last week.
I remind noble Lords—I appreciate that this is probably the third time I have said this—that for me this comes back to the practical experience of when the NHS was left to deal with end-of-life care in certain ways. The Liverpool care pathway was so horrific that I cannot in any way see how it could be controlled if we were to adopt the proposals put forward by the noble Lord, Lord Birt. We saw it go badly wrong, and I am pleased that Ministers eventually intervened. It took time, but it did happen.
On these regulations and other aspects of running this service, if we are going to have it, I agree with my noble friend Lord Sandhurst that it should be more of an MoJ focus. Inevitably, it has become a big health focus. It is not clear, from what noble Lords have set out in their proposals, how this interacts with the whole Wales situation. The Bill’s sponsors have, I think, about 12 officials from the Department of Health and Social Care working on the Bill, which is three or four times the number at the MoJ, so there should be some understanding of how this will work. I genuinely hope that the Minister will start to share that, so that this House can make informed choices as we consider such a significant change in what could be the future of our NHS.
Baroness Berridge (Con)
My Lords, I am grateful to the noble Lord, Lord Moore, for answering much of what would have been in my intervention to the noble Lord, Lord Winston. In my 15 years in your Lordships’ House, it has been the usual practice to give way, but I recognise that noble Lords have the prerogative not to accept an intervention. But I find it surprising—and I have never known it before—that the noble Lord is now no longer in his place. That is not in accordance with the advice that the Chief Whip gave this morning that we should treat each other in this House with respect.
The only additional point I make in response to the noble Lord, Lord Winston, who clearly did amazing work on the creation of life—it was on the television as I grew up—and the noble Lord, Lord Markham, who talked about the pathway that midwives give for the safe delivery of that created life, is that it is entirely different to talk about a situation where the state pays for and facilitates lethal drugs to enable a citizen to end their own life.
Looking at the amendment—
Lord Markham (Con)
If I may respond to the noble Baroness’s first point, I believe that the noble Lord, Lord Winston, as well as the noble Lord, Lord Mackinlay, who is not in his place either, mentioned that they had appointments that they needed to go to. I believe that that is why the noble Lord, Lord Winston, is not here now.
Baroness Berridge (Con)
Well, I hope that he will write to me personally about this.
In relation to the evidence on which the noble Lord, Lord Birt, is basing his argument, I was surprised that the right reverend Prelate mentioned the Australian non-comparable. Paragraph 8.4 of the impact assessment, on the delivery model, states that
“in most jurisdictions where assisted dying is legal it is provided through the healthcare system”,
so looking for international comparators is an unusual approach. The 30 jurisdictions that we keep hearing about include the Isle of Man, Tuscany in Italy, and only 13 of the 50 United States. This is not a wave that we must get with, as many progressive politicians like to say it is. Denmark considered this in 2024, and 16 out of 17 members of the Danish Council of Ethics voted against introducing assisted dying into their jurisdiction. Only yesterday, the French Senate decided not to go forward with legislation. This is in no way a progressive train that we need to get on.
My second point relates to the speed of these decisions for families. We know that the Bill is philosophically based on individual autonomy, which is anathema to many communities. For families to know that this was done within 18 days will only compound what we believe will be complicated grief. I am particularly concerned about how the speed of service will fit in with the increasing uncertainty of diagnoses for 18 to 25 year-olds because of the various positive effects of treatments for them. The noble and learned Lord, Lord Falconer, has admitted that there are, sadly, deficiencies in Clause 43 in relation to advertising. I do not think I am a cynic, but I am sorry to say that I can see a competition: “Can I get to 18 years and 18 days and be the first young person to meet that milestone?” We do not want a culture of speed in this process, limiting reflection.
Finally, maybe I am the only noble Lord sitting here without the benefits of the pre-legislative scrutiny of a consultation White Paper but, with many amendments, I am wondering how this service will fit together with a panel—or will it be a judge, or a judge with a couple of other members? That is the deficiency: in Committee, we are still trying to put right the lack of pre-legislative scrutiny, and I do not know whether that is possible.
Lord Weir of Ballyholme (DUP)
The noble Baroness raised the issue of speed. It comes back to a point raised by the noble Baroness, Lady Fox. Often in public policy issues, there is a trade-off between the speed of a decision and its quality. Sometimes when we short-circuit or fast-track decisions it can inevitably lead to a greater level of mistakes being made. But in a wide range of other public administration or public policy decisions, there is at least the advantage that if a mistake is made, there is the opportunity at a later stage to come back and correct it—to perhaps appeal, review or reverse it. Of course, the major problem with this is that if we fast-track things and it leads to a death that should not have occurred, we cannot bring the person back to life.
I agree with the noble Lord, Lord Markham, who said in response to an intervention from the noble Baroness, Lady Berger, that he perfectly acknowledged that we should have the safest possible system—I see that he is nodding now. I therefore find it very difficult to see how we get the safest possible system if these amendments go through and decisions are fast-tracked, inevitably leading to greater numbers of mistakes and shortcuts.
Lord Falconer of Thoroton (Lab)
It is for Parliament to decide whether it is willing to pass the Bill. If Parliament is willing to pass the Bill, there may be the need for the legal change that the noble Lord, Lord Stevens, referred to. Whether or not you are willing to make the change is, for the reason I have said, a matter of what you think is the principle. Those are the only remarks that I need to make in relation to that, and I invite the noble Lord to withdraw his amendment.
Baroness Berridge (Con)
There will later be a group of amendments that relate to freedom of conscience. The noble and learned Lord has outlined another group of people in response to solving the issue from the Delegated Powers Committee around commissioners and NHS England. At this stage, in an effort to use our time efficiently, will he think about how wide the conscience clause will need to be to include people who have objections to this—it is not just clinicians; it may be those who do not want to be involved in commissioning these services—so that we do not end up with a huge group later in Committee?
Lord Falconer of Thoroton (Lab)
I will certainly think about it. I am not quite sure what the noble Baroness is asking, but whatever it is, I will try to co-operate as much as possible.
Baroness Hollins (CB)
My Lords, for the purposes of the point I am making, I am going to proceed on the assumption that was put forward by the sponsors that the drugs used for an assisted death are to be treated as a healthcare intervention, although I do not accept that this assumption is correct. If that assumption is made then the legal and ethical standards governing informed consent must apply in full. I added my name to Amendment 55, which would require that the patient understands fully the physiological effects of the lethal drugs used for assisted suicide and their possible complications.
The General Medical Council provides guidance on decision-making and consent to medical professionals. It requires that a clinician must be satisfied that a patient has given valid consent before an intervention unless there are certain legal exceptions, which would not apply to assisted dying. The guidance is explicit about what informed consent requires. Patients must be given clear, accurate, up-to-date and evidence-based information. For every option, clinicians must explain the potential benefits; the risks, including side effects and complications; the uncertainties involved; and the likelihood of success. Where there is uncertainty about outcomes or the quality or limits of the evidence, the clinician has a duty to be open about that uncertainty. Informed consent is not compatible with ambiguity being concealed, minimised or glossed over.
Who provides this important information for the consent process? The MHRA regulates medicines in the United Kingdom by assessing their safety, quality and efficacy before licensing, and by monitoring harms after licensing through the Yellow Card scheme. I intend to return to this in a later group. The GMC is explicit that a clinician should propose or prescribe a medicine or treatment only when they have sufficient and reliable information. This includes agreeing with the patient by giving a clear explanation of the benefits, the risks, the common and serious adverse effects, and what to do if problems arise.
On the drug protocol, there is currently no internationally agreed prescribing protocol for assisted dying. There is a wide range of drug types, combinations and doses being used, with significant variation even within individual countries. Protocols include varying combinations of barbiturates, benzodiazepines, opioids, cardiotoxic agents and neuromuscular blockers. Under the current Bill, the intention appears to be that the drugs to be used for assisted dying would be prescribed off-licence. An unlicensed drug is one used outside the terms of its licensed indication. Under existing GMC guidance, prescribing an off-licence drug requires a clinician to
“be satisfied that there is sufficient evidence … to demonstrate its safety and efficacy”.
However, there is no systematised clinical research, no standardised reporting and marked variability in practice. The pharmacokinetic and pharmacodynamic data available for these drugs individually come from therapeutic use, which is quite different from the very high doses or combinations required to induce death.
The Government’s impact assessment refers to an experimental drug regime from Oregon, one of the few jurisdictions that has published the outcomes of orally ingested approved substances. These drug combinations are not the product of conventional clinical trials but a form of human experimentation that was introduced without prior scientific evaluation and bypassing conventional regulatory frameworks. A combination of four drugs was chosen out of necessity because of restricted access to barbiturates, rather than good evidence of safety and efficacy. Subsequently, a fifth drug has been added in an attempt to reduce the median time to death. Rather than the quick and pain-free death advertised by the sponsors and campaigners, what has been documented are significant adverse effects, as reported by the noble Baroness, Lady Lawlor.
The drugs generally regarded as most effective in assisted suicide are barbiturates, particularly high-dose pentobarbital and, less commonly, secobarbital. These were the agents used in Oregon before restrictions on their export to the USA because of their use in capital punishment. This restriction forced assisted suicide providers to look for alternatives. The barbiturates cause death by reducing brain activity, leading to loss of consciousness and respiratory arrest. They are the same agents used in veterinary euthanasia in the United Kingdom, where they are subject to very strict veterinary regulatory requirements. However, these substances are not licensed for human use in the United Kingdom. They are class B controlled drugs under the Misuse of Drugs Act, meaning that they cannot be prescribed, imported or possessed without Home Office authorisation. The assertions made in the other place and in the Government’s impact assessment that appropriate drugs are already licensed and available for off-licence use appear to be incorrect. I would welcome the noble and learned Lord’s response to this.
Despite this, the proposed approach does not involve licensing by the MHRA, nor appraisal or guidance by NICE, and no clinical trials are required. Instead, the Bill grants the Secretary of State the power to specify the drugs and procedures by regulation, including their manufacture, supply and storage, thereby bypassing the established regulatory frameworks that apply to every other drug.
I could describe what the consent process might look like. When a drug is prescribed for you, you get a leaflet which sets it all out. It tells you what the indication is, what the likely success is and what the most common complications are. One in 10 is very common, and these are the kinds of side effects, complications or adverse effects described by the noble Baroness. Imagine saying to the patient that outcomes are variable, and many complications have been reported, suggesting that one in 10 people who take this combination of drugs may experience vomiting, seizures or may regain consciousness. One in 10 is very common. You would also have to say that there is no guidance or certainty about what support would be provided to you if you experienced these very common adverse effects.
That is what the obtaining of informed consent would look like under the current Bill. That would not be acceptable to any regulator or professional body, or, I suggest, to any patient who had the capacity to consent.
Baroness Berridge (Con)
My Lords, I support Amendment 39A, tabled by my noble friend Lord Blencathra. I am pleased to see my noble friend Lord Wolfson at the Dispatch Box, because although I support the amendment, it is more that it enables us to raise important principles, not necessarily the details.
I am grateful to the noble Baroness, Lady Hollins, for outlining informed consent and mentioning that the patient has to have sufficient and reliable information. The noble and learned Lord’s Bill says that there should be a
“clear, settled and informed wish”.
This is another occasion where I fear that the Bill is legislating for an analogue age. Much of the principle around informed consent comes from a situation where the patient is gaining much, if not most, of their information from the clinician or support staff. That is not the case today. We know that people have access to many more sources of information.
I ask the Minister and the sponsor of the Bill: what is the situation in regard to reliable information or an informed wish if in front of the clinician is a young person who basically has just been watching on a doom loop information that is false? We have the problem now—there may be an issue around the development of the law on informed consent here—of people having a lot of misinformation or false information. From the wording of the amendment, it is not clear what the duty would be on the clinician if they are aware that the person has an informed wish but it has been informed by false information.
Baroness Berridge (Con)
The obligations that have just been explained refer to medical treatment, but this is not a medical treatment. The previous comments are not accurate because the normal clinician’s responsibility is one of the things that we need clarifying. Clause 12(2)(d) refers to
“their wishes in the event of complications”,
but there is no obligation to talk about the risks of complications. Those are different things—your wishes and the risks.
Baroness Lawlor (Con)
Is it the noble Baroness’s understanding of Clause 12(2)(d) that, while there is an obligation to discuss the person’s wishes in the event of complications arising, there is no obligation to discuss exactly what those complications could be?
Baroness Berridge (Con)
I made precisely this point, not about the information that is provided but about how people are getting their information, and about misinformation. We are beginning to hear of cases of ChatGPT potentially suggesting that a young person take their own life. Informed consent as the noble and learned Lord described is very much in the classical sense, as I learned. The point I made is about dealing with misinformation and malinformation. What is the duty now? I invite the noble and learned Lord to write to me, but I think—I hope—it is a developing area of law.
Lord Falconer of Thoroton (Lab)
I apologise; I should have answered that request. I do not want to write; I want to tell the noble Baroness the answer now. The Bill, in the places that I have indicated, says that the panel, the two doctors and the assisting doctor must be satisfied that the consent is informed. If the position is that the person who wants the assistance, or is about to get the assistance, is misinformed in the way that the noble Baroness described, that would not be informed consent. For example, having been subject to digital information that is completely wrong or misleading in what it says would not be informed consent. As time goes on, no doubt doctors and others who have to satisfy themselves that the consent is informed will have to take steps to ensure that the patient’s understanding is right.
This goes to what the noble Baroness, Lady Finlay, said. Sometimes, people do not take in what you are saying. Some people take in the wrong thing. Other people are, in the back of their mind—you cannot know this—thinking of something that is completely wrong. It is for the doctor or the panel in every case to satisfy themselves. It is explicit in the Bill that consent must be informed.
Baroness Berridge (Con)
The noble and learned Lord just referred to a civil suit. If I remember correctly, from the Public Bill Committee in the House of Commons, this Bill fundamentally changes the availability of civil remedies in tort, with the additional criteria that the practitioner is protected as long as they are acting in good faith. I merely raise that for the noble and learned Lord so that the record is correct.
Baroness Coffey (Con)
May I see whether the noble and learned Lord can give me an answer on the idea of having the principles in the GMC guidance? They have come in only as a result of the Montgomery ruling in the court.
Lord Falconer of Thoroton (Lab)
Again, I do not think it needs to be on the face of the Bill, because the Bill is clear about the rights of the doctor in relation to that.
Baroness Berridge (Con)
Sadly, for the noble and learned Lord, I think that there are more amendments that need to be discussed, including one that I have laid. We have all discussed this on the basis that there is no one else in the room. There could be relatives there expressing a wish. We have discussed this on the basis that the patient rises and has capacity. They may not have capacity and there may be relatives in the room with enduring powers of attorney. The noble Baroness, Lady Hayter, shakes her head, but there are many scenarios in which there is not clarity in the Bill between the moment the drug is administered and the moment of death or it fails. I am afraid that I give the noble and learned Lord notice that I think we will have to come back to this, because the medical profession is asking for clarity.
Baroness Hayter of Kentish Town (Lab)
Can I put it on record that I am not shaking my head? I think it was made clear that the power of attorney could not be used for this purpose.