Lord Carlile of Berriew
Main Page: Lord Carlile of Berriew (Crossbench - Life peer)
Lord Birt (CB)
My Lords, I shall speak also to all the other amendments listed in my name and that of the noble Lord, Lord Pannick, who, having assiduously attended our sessions on the Bill thus far, as all will have noticed, deeply regrets that he cannot be present with us today.
Our discussions to date have focused overwhelmingly on risk, and I do not for one moment dispute the necessity and the value of that. I will return to how best we can manage those risks later in my remarks. However, let us not forget that we are not pioneers. Thirty countries, states or jurisdictions across the world have already introduced assisted dying. The first did so over 80 years ago; there has been a steady stream this century and, hot off the press, just two days ago, an assisted dying Bill for the Channel Island of Jersey passed its First Reading by a two to one majority and is expected to pass into law next month. It is therefore at the very least equally important that we do not just focus on risk but lean on the well-established experience of others when considering the critically sensitive matter before us, which we know from serious studies carries overwhelming public support.
For my part, I have been exposing myself to the Australian experience, with considerable help from senior practitioners, for which I am most grateful. Without exception, those to whom I have been exposed come over as deeply caring and enormously considered. What I have learned from them, and from the copious data that is available, is reflected in the amendments before your Lordships today. Much that I have discovered has been surprising as well as enlightening. First, applications for assistance in Australia are not automatically accepted; something like one-third are turned down. Secondly, around 75% of those seeking assisted dying have cancer, and somewhere between 75% and 90% of all those who come forward are already in receipt of palliative care and are more motivated by their distress and misery than by their pain. Although I completely agree with all noble Lords who have stressed how vital it is to have effective, universally available palliative care, it is clear that it is not sufficient for many experiencing truly horrific medical conditions.
For those who have not read it, I commend Jonathan Dimbleby’s moving account in a recent New Statesman of his brother Nicholas’s harrowing final days. Nicholas had fallen victim to motor neurone disease. It became impossible for him to take solid food without choking. He then had a tube inserted into his stomach, through which he had to feed himself. Nicholas became increasingly hard to understand. He was barely able to move. He lost control of his bodily functions. He was often frightened and sometimes terrified. He gasped in vain for breath. Nicholas Dimbleby, finally and mercifully, died in February of 2024. Other UK practitioners I have met recently, simply by chance, have shared with me equally horrific accounts of deaths that they have witnessed in the ordinary course of their work.
Such experiences must explain why, in Australia, although around 10% to 15% of those seeking an assisted death apply some months in advance of their anticipated need, a significant proportion wait until their suffering is unbearable. As a result, around 25% of applicants die within nine days of their first request—I repeat, 25% of applicants die within nine days of their first request. A further 25% die within 10 to 19 days. Thus, in Australia, around 50% of applicants die within 19 days of their first request. The leading Australian practitioners who have advised me insist that sheer misery is the primary determining motivation of individuals seeking assisted dying. Further to illuminate the complexities of the process, around one-third of those who ask for and are given the death potion do not take it and choose to die a natural death.
Lord Birt (CB)
No, I am sorry—I have an argument to put; I am not going to take any interruptions.
Furthermore, one of Australia’s most senior and experienced practitioners tells me that, although in theory it must be a risk, she herself has never experienced a single example of coercion. On the contrary, she says, she has on occasions experienced the very opposite: loved ones understandably pressing someone who wants assisted dying not to embark on that course of action. Overwhelmingly, her experience is of applicants who know their own minds and are perfectly able to make a considered decision.
From all my discussions, I have concluded firmly that if this Bill passes into law, it is vital that the processes are based on day-to-day realities, as well as risk, and work efficiently and sensitively for any individual of firm and settled mind coming forward in a state of deep distress. We need more flexibility in the timelines of the process than the present Bill allows and a fit-for-purpose organisational focus that delivers promptly and humanely for individuals in severe need.
In our amendments, the noble Lord, Lord Pannick, and I propose three key measures. The first is to create a new organisation, the assisted dying help service, to enable the individual easily to navigate the complex process set out in this Bill, which in essence we retain. The second is to ensure that the assisted dying process is expeditious and, when conditions demand it, flexible. The third is that the commissioner acts solely as a regulator, with oversight but without any delivery responsibility.
The process currently set out in the Bill involves a 10-stage process, with three separate medical consultations with three different doctors, a confirmatory panel and two periods of reflection, the first of seven days and the second of 14 days, the latter of which can be shortened. Absent a bespoke organisational focus, this process in a stressed NHS could take a wholly inappropriate and disproportionate period of time. Hence our proposal is that we adopt a notion present in many jurisdictions of a purpose-built organisation—an assisted dying help service—that would provide a personal navigator to take the dying person and their loved ones through the whole complex process, providing introductions, keeping to timelines and piloting the individual through their final challenging and traumatic journey. Our amendments also propose appropriate flexibility, at every stage, with safeguards for doctors to act with urgency if the individual’s condition demands it.
Lord Carlile of Berriew (CB)
My Lords, my noble friend Lord Birt was, of course, perfectly entitled to refuse my attempt to intervene in his speech. I am, however, disappointed that he chose to defy the determination of this House that we should not have repeated Second Reading speeches. Every one of us here can stand up and make a Second Reading speech on any of these amendments if we defy that determination, and I hope that he will not do it again. I am sure it was a misunderstanding on his part about the way in which he was able to move his amendment.
As to his amendment, I am afraid that I am suspicious about his group of amendments, and I think he gave the game away in the way in which he later turned to and referred to them. It is clear that he is very keen on there being a more extensive provision for assisted suicide—that people far beyond the scope of the noble and learned Lord’s Bill should be able to claim and achieve assisted suicide. Some of his amendments I agree with—I would love to see better care for people who are facing the end of their lives—but behind his amendments is a death service. As the noble Lords, Lord Deben and Lord Harper, said, what he is providing is a way to death, not a way to enjoy and make the most of the rest of your life. I would urge noble Lords not to support these amendments, because I regret that their motivation is not even consistent with that of the sponsor of the Bill.
Lord Stevens of Birmingham (CB)
My Lords, I speak specifically against Amendment 771, which would require the Secretary of State to establish an assisted dying help service as part of the National Health Service. I believe that that is a conceptually misplaced proposition in that, if we cast our minds back to last Friday, it was completely evident that the sponsor of the Bill does not intend that only in cases of unbearable pain or suffering would a person be eligible for the assisted dying service. Instead, concerns about your finances or being a burden on your family would be defined as legitimate bases for making the choice to opt for an assisted death.
It is not the proper function of a national health service to deal with financial burdens or pressures on people’s families in that way: that is a category mistake. Indeed, the founding charter for the NHS, the National Health Service Act 1946, is quite clear, and all successive health Acts have laid out the purpose of the NHS, which is
“to promote the establishment … of a comprehensive health service designed to secure improvement in the physical and mental health of the people of England and Wales and the prevention, diagnosis and treatment of illness”.
Assisted dying does not fall within the scope of that purpose. In fact, I think that must be evident indeed to the drafters of the Bill, because somewhat camouflaged at Clause 41(4) is the suggestion that, by regulations, that founding charter for the National Health Service could be amended to include assisted dying. They reference the fact that change is probably required to the most recent iteration, the 2006 Act, to bring that about. I do not think it can be said legitimately that this is a part of the purpose of the National Health Service, and it is unnecessary in practice, organisationally.
Just because doctors, like lawyers and social workers, are proposed to be involved in this, it does not mean it is inherently part of the National Health Service. Doctors do DWP assessments, but that does not mean the National Health Service runs the benefits system. Doctors are involved in driving licence assessments, but that does not mean the National Health Service runs the DVLA. Doctors are involved in the criminal justice system as forensic medical examiners, but that does not mean the NHS needs to run the court system.
Lord McCrea of Magherafelt and Cookstown (DUP)
I thank the noble Baroness. I realise that my time is up, but I draw to a close by asking noble Lords to notice the emphasis on GMC guidance. Guidance is not the law. The GMC itself states in its preamble that its guidance is intended to help doctors
“practise ethically and in line with law”—
it cannot make the law. It goes on:
“If you’re not sure how the law applies in a given situation, seek advice through local procedures, consult your defence body or professional association, or seek independent legal advice”.
It says finally:
“The professional standards describe good practice, and not every departure from them will be considered serious”.
That is equally true for NICE guidance as well.
Lord Carlile of Berriew (CB)
My Lords, as a former, if somewhat historic, member of the General Medical Council, I can confirm that the GMC has no guidance relating to ending someone’s life because it is, at the present time, simply unlawful to end someone’s life.
I hope that I can try to simplify what is being discussed. I agree with the noble Lord, Lord Blencathra, that there is a need to add something, though possibly not very much, to this Bill to ensure that consent, as consent, is included. We are talking about four stages. The application is not consent; it is just an application. Capacity is measured and is not an application. The discussion described in Clause 12 is a discussion, and I say to the noble Lord opposite that it is most definitely not the obtaining of consent. Then there is the issue of obtaining consent, which includes the effect of any drugs to be used, and that is what I think the noble Lord, Lord Blencathra, is seeking to add to this Bill.
Let me briefly give an example from my own experience. I had an extraordinarily formidable and occasionally difficult mother, and on one occasion she had a heart attack, not long before her death. She was taken into a very good cardiology unit in Blackpool, so I rushed up to Blackpool at high speed and found myself on the ward with my mother—whose eyesight and hearing were not good, but her brain was as good as any in your Lordships’ House—and a consultant. The consultant explained that he could do an operation which he had done once on a male patient aged 91, but he was prepared to try it on my mother. She was very enthusiastic to have any medical treatment that might prolong her life, which, after all, had by then lasted for only 98 and a half years.
Once we had had the discussion, the cardiologist proffered a consent form to me. My reply, which I will abbreviate, went something like, “Not likely; she is perfectly capable of consenting herself. But it must be explained to her so that she can hear it clearly. So, why don’t you sit down while I explain what you have said to me, and you correct me if anything is wrong?”
In due course, she signed the consent form and had the operation. Happily, the operation was entirely successful. Sadly, the effect of the operation gave her such a pounding heart that the rest of her bodily functions could not cope with it. She died a few weeks later. When she said to me during the period before her death, “Darling, I never thought it would end like this”, I thought to myself, thank God she signed the consent form, not me.
Consent has a conspicuous and real meaning. It requires full understanding from the patient. It can go horribly wrong, as it unfortunately did for my mother. I wish we had been able to celebrate her 100th birthday. But that element of consent, consent, consent—a bit like “education, education, education”—is not clearly set out in the Bill. It is not a major change to be made, and I would invite the noble and learned Lord to incorporate it.
Lord Wolfson of Tredegar (Con)
My Lords, the amendments in this group seek to establish a higher bar for reaching eligibility by requiring that informed consent be demonstrably shown. There are also amendments in the group tabled by my noble friend Lady Lawlor that seek to ensure that the patient has been made to understand the physiological effects of the drugs used. I will deal with each of these points, but fairly briefly, given the time.
Demonstrable consent is primarily a question of workability. It is the view of everybody, so far as I have heard, that a person must consent to receive assistance. The Bill allows assistance only if the person themselves takes the final step, which is in itself an important safeguard. But these amendments pose important questions for the Minister. What work have the Government done to date on establishing a process to ensure that all those receiving assistance under the provisions of the Bill will in fact have consented? What checks will there be on the service providing this assistance? How will Ministers and others respond to complaints or allegations of malpractice in relation to a person’s consent? All those questions touch on the key point: the practical day-to-day implementation of the Bill and ensuring that its provisions are complied with.
Most of the speeches in this group have dealt with the second issue—the amendment from my noble friend Lady Lawlor. It stands to reason that a person in receipt of assistance should be given all the information they need to ensure that they are making an informed choice. Certainly, that would seem to include the physiological effects of the drug they will take. When patients receive any drug or have any medical treatment, a doctor will explain the proper dosage and how it will affect them, and they will also advise on potential side effects. One would assume that the same level of explanation would be provided by doctors in this case, but I am interested to hear whether the Minister and/or the noble and learned Lord the promoter of the Bill will confirm that in due course.
My noble friend Lady Berridge threw me something of a curveball when she asked what the duty on a doctor is. That is a detailed question and, given the time, I will not give a very detailed answer, but it is notable that—this is an important point because it shows how things have changed over the years—if you go back, quite a long way, to the Hippocratic Corpus in the fourth to fifth centuries BCE, it advises physicians to reveal nothing to the patient of their present or, indeed, future condition,
“for many patients through this cause have taken a turn for the worse”.
Lord Falconer of Thoroton (Lab)
The noble Lord makes a good point: how do you, in dealing with a wide range of cultures, establish that it is the informed wish of the individual that they want an assisted death? You cannot prescribe in a Bill how you would do it in every case, but there is absolutely no doubt, as far as the Bill is concerned, that the establishment of that informed wish is the basic foundation before you get there. Therefore, in each case, if it involves a different culture or a different language, that must be gone through before you can be satisfied.
Lord Carter of Haslemere (CB)
I am very grateful to the noble and learned Lord for his explanation of informed consent. There is a little doubt as to whether giving people lots of information, leading to an informed wish, actually encapsulates them fully understanding it. I was wondering: is the answer to this not to put in a definition of informed consent? Would that not be sensible? Then it is there in black and white. I have it here—AI is very helpful sometimes, is it not? “Informed consent is a process where a person voluntarily agrees to medical treatment, research, or a procedure after receiving and understanding all relevant information, including risks, benefits, alternatives and consequences, and they have a capacity to decide and are free from pressure”. There is a beautiful little definition that you could put straight into the definition section, and everyone would be happy.
Lord Falconer of Thoroton (Lab)
I thought carefully about that. The language concerns whether it is the person’s clear, settled and informed wish. Interestingly, the law—the Supreme Court—over a period of years constantly changes what in individual cases informed consent, or informed wish, as it is in the Bill, might be. The essence of the word “informed” is that you have enough material to make the decision. I hear what the noble Lord, Lord Carter, says, and I see what AI says about it, but I think it is better just to say, “informed wish”.
Lord Carlile of Berriew (CB)
I apologise to the noble Lord, Lord Carter; I did not see him behind me. The noble and learned Lord, Lord Falconer, has been using the phrase “informed consent”—
Lord Falconer of Thoroton (Lab)
“Informed wish” is in the language of the Bill.
Lord Carlile of Berriew (CB)
The noble and learned Lord has been using the phrases “informed consent” and “informed wish” as though they are definitely synonyms. I just wonder why we do not se “consent” with “informed” next to it in the Bill because, as the noble and learned Lord has let slip, informed consent is a well-understood concept. Putting it in the Bill would take away most of the doubts that some of us have expressed. What is the problem?
Lord Falconer of Thoroton (Lab)
The format of the Bill asks: “Is it your wish to receive assistance?” It has to be an informed wish. It seems to me that there is no need to add in another concept—that of informed consent —when we have “informed wish”, which is perfectly adequate.
Lord Markham (Con)
The noble Baroness is talking about a slightly different circumstance where there are prior reasons, which could be mental health or other reasons, and why that could be a cause. What we are talking about here is basically the criterion on which you can first be assessed for assisted dying, which is, of course, that you have been diagnosed in the first place. To the point that, of course, people might then live longer, my experience is that they are delighted by that. Just because they have been assessed as being able to have assisted dying does not mean that they will take the medication. Again, evidence shows strongly that they will take the medication only right near the end when the pain, the loss of dignity or whatever the reason is becomes unbearable. My experience is that those people would be delighted if it was a misdiagnosis, and if they are fortunate enough to be living 30 years later, as per some of these examples, that would be fantastic. Of course, they will not have taken the medication. The point is that they take it only right at the end where there is no other choice, so to speak.
Within that, accepting that these are the people we are talking about, of course there are all sorts of different motivations why, when they are unfortunately at the point where they are looking at such a death, they might want to go ahead with it. Research shows that there are multiple reasons; it is impossible to put it down to just one. Loss of autonomy, less ability to engage in enjoyable activities, loss of dignity, loss of control of bodily functions, burden, inadequate pain relief or finances are all part of the reasons. They are all part of the research, and, on average, you will find that there are three or four reasons to do it.
So it is quite wrong to say, “No, we’ll only allow you to go ahead with this if you only have that single motivation”. As I said before, they would rather not be there in the first place, but given that they are in that unfortunate circumstance, surely they should be allowed the choice of why they wish to die.
Lord Carlile of Berriew (CB)
My Lords, I put my name to the amendments of the noble Baroness, Lady Berger, and I will not repeat what she said. She opened the debate on these amendments with superb clarity, characteristic of her contributions to your Lordships’ House.
I have been shocked by what I have just heard from the noble Lord, Lord Markham. I ask him just to reflect on two contributions made earlier in this afternoon’s session by my noble friend Lord Mawson, who, from his own experience, described what happens in poorer neighbourhoods, which he has experienced very directly, in which people face different problems and are more likely to want to die for reasons to which their terminal illness is just an ancillary point.
I have been involved in these debates since I came into your Lordships’ House at least. I was on the Joffe Bill Committee with my noble friend Lady Finlay. In the Committee on that Bill, in all the other Bills I can remember since, and particularly in all the case law that I have followed over the years—mostly very celebrated cases—the purpose of asking for assisted suicide has been to alleviate terrible suffering. That has been the sole purpose for demanding a change in the law: to alleviate terrible suffering. I do not believe that the noble and learned Lord wishes to achieve anything different from that. It is just that it does not say in the Bill that the purpose of having assisted suicide should be to alleviate terrible suffering.
Of course, there may be other issues at work in that person’s mind when they ask for assisted suicide—we cannot read every synapse in their brain—but we are here to legislate to save people from terrible suffering, if the Bill is to pass. I am very concerned that the Bill should be amended so that the capability to have assisted suicide does not arise as an opportunity to commit suicide. The reason to commit suicide, the absolute cause, should be the intolerable suffering.
Baroness Wheatcroft (CB)
Would the noble Lord accept, however, that it would be deeply unfair if somebody whose major wish was to end their terminal illness, and the pain and intolerable suffering that was coming with it, was to be denied that right because they were also concerned about numerous other things? Very few people have a perfect life, even when they are close to death. To deny that person the right to an assisted death because they might have concerns beyond their suffering would seem to be cruel in the extreme.
Lord Carlile of Berriew (CB)
I do not think there is much difference between what I am saying and what my noble friend is saying. I am saying that, if this law is passed, people should be able to obtain assisted suicide because of intolerable suffering. I am not seeking to exclude other matters that might be in their mind, but the cause of asking for assisted suicide should be that suffering. The medical profession, lawyers and judges in particular—if we have the judicial option rather than the panel option—are perfectly capable of reaching a decision on the facts that would lead to the appropriate conclusion.
Baroness Jay of Paddington (Lab)
My Lords, I was only going to say to the noble Lord that, as I am sure he will remember, I too was a member of those earlier Select Committees. I am sure in that context he will remember that the arguments, discussions and vagueness, frankly, about how one would ever define “intolerable suffering” in a legal sense, or an Act of Parliament, were even more intense than the ones we are having today. That was because there is even more subjectivity about the concept of “intolerable suffering” than there is about any other.
Lord Carlile of Berriew (CB)
I do not agree with the noble Baroness, much as I admire her contributions to this House. I believe that, as a legal concept, what I am suggesting is absolutely clear and could be defined properly if we were to use the courts to make the determinations.