Scottish legislative consent correspondence published, Northern Ireland legislative consent sought, Welsh legislative consent granted. Relevant documents: 32nd and 36th Reports from the Delegated Powers Committee, 12th Report from the Constitution Committee, Report from the Terminally Ill Adults (End of Life) Bill Committee.
122: Clause 4, page 2, line 24, at end insert “and a Voluntary Assisted Dying Director”
Member’s explanatory statement
This amendment and other amendments in the name of Baroness Cass seek to separate the role of Voluntary Assisted Dying Director and Voluntary Assisted Dying Commissioner, and are intended to address the existing position of the Voluntary Assisted Dying Commissioner in the bill which is responsible for the monitoring and assurance of the Act, whilst also having a role in its operational delivery.
My Lords, I will be brief, because I believe that my Amendment 122 and the consequential amendments that follow it address a very straightforward and practical issue—saying that could be the kiss of death, but never mind. It is absolutely self-evident that, if this Bill passes into law, the monitoring of its implementation will be absolutely crucial.
There are several aspects of implementation that we will need to follow closely. The first is any evidence of the concerns that have been widely expressed in this House of coercion, particularly to take account of differentials in the socioeconomic circumstances of those seeking assisted deaths. Secondly, we need to be aware of postcode lotteries in implementation and particular challenges in staffing and delivery in certain localities. Thirdly, we need to be aware of creep, as has occurred in other jurisdictions.
In a later amendment, I have proposed that voluntary assisted dying services should be commissioned by the specialised commissioning team currently located in NHS England. This team commissions highly specialist small volume services, and the assisted dying services would fall within this definition. The advantage of this approach is that there would be a national service spec, nationally defined workforce requirements and quality standards, and monitoring of the contract by the national team.
In late January, the noble and learned Lord, Lord Falconer, notified us of his planned amendments to ensure that the service will be regulated by NHSE or the CQC, or both. However, it is not yet clear how that might work in practice. This leaves us with the currently proposed arrangements in Clause 4, in which the voluntary assisted dying commissioner has a dual role. He or she is required to take on much of the operational delivery of the process and, at the same time, monitor the operation of the Act and report on it to national authorities. I submit that it is not appropriate for the commissioner to be both poacher and gamekeeper and to mark their own homework, because they will be mixing their roles as shamelessly as I have just mixed my metaphors.
I will speak briefly to my amendment in this group because it is my duty shortly to chair the Committee. To broaden the debate that the noble Baroness, Lady Cass, introduced, I simply say that there is clearly a need to establish that this post can have confidence and a degree of consensus around it. I am not sure that that has been achieved by what has been proposed so far.
My amendment simply brings in the procedure used in the Commons for most regulatory posts: they are the subject of some sort of hearing process by the relevant Select Committee. That system was developed in the years when I was in the Commons, and as chair of the Justice Committee I operated it several times. It works reasonably well. In rare cases, the Treasury Committee, for example, has a veto on the appointment, as this amendment suggests, but it is a means of trying to ensure that the right questions are asked at the right time when appointments are made. Surely, after recent weeks, we have learned the lesson that, if you do not have proper scrutiny of appointments and a system in which the right questions are asked, things can go very badly wrong. We certainly do not want them to go badly wrong in this area. That is sufficient to explain what my amendment is about.
My Lords, I am grateful that the noble Lord was able to introduce his remarks before he has to go and perform his functions as chairman of the Committee. I have only a few things to say, and my amendment is discrete, in the sense that it does not really affect much of the rest of the Bill. It can be taken quite briefly, and I hope that the noble and learned Lord, Lord Falconer, will be able to agree to it, not least because it bolsters the job that he once held.
With respect, I disagree with only one point that the noble Baroness, Lady Cass, made. The function of the commissioner is not simply administrative; there is a judicial element to their work, which is found in Clause 4(4)(d). One of the principal functions of the commissioner is
“determining applications for reconsideration of panel decisions under section 18”.
That said, I fully accept that it is a mixed-function job: it is partly administrative and partly judicial—but then so are quite a lot of senior judicial jobs. The Lord Chief Justice and the Master of the Rolls all have heavy administrative burdens as well as having to perform a judicial function, and no one would suggest, I venture to say, that those people should be appointed directly by the Prime Minister.
It is more constitutionally appropriate for the voluntary assisted dying commissioner to be appointed, as so many other judicial and quasi-judicial posts are, by the sovereign on the recommendation of the Lord Chancellor. I appreciate that the office of the Lord Chancellor has changed a lot since the 2005 Act—more’s the pity, in my view, but there we are. That was a long time ago. When I become Prime Minister, of course, I shall have it changed.
There is a nice distinction to be drawn with the appointments made in the way that I suggest. If my amendment is accepted by the Committee or by the House as a whole, it will obviously have a knock-on effect on the appointment of the deputy commissioner under paragraph 3(1) of Schedule 1—but let us not delay ourselves with that. All I am saying is that it is more appropriate for this particular function to be appointed by the sovereign on the advice of the Lord Chancellor, as so many similar posts are.
My Lords, I will speak to three amendments in this group, two of which stand in my name. The third is Amendment 128 in the name of the noble Baroness, Lady Foster, which I have co-signed and will touch on briefly now.
Amendment 128 is essentially probing in nature. The Bill lists the principal functions of the commissioner—we do not take particular exception to that—but does not outline their specific duties, so we feel that there is a bit of a gap at present and are probing whether the duties are correct and whether the commissioner has a role in ensuring effective oversight. I look forward to hearing the response of the Bill’s sponsor on that.
I move on to Amendment 129, following on from the remarks of the noble Baroness, Lady Cass. When I arrived today I did not anticipate that she would be my warm-up act in relation to the amendment—I thank her for her remarks. The amendment essentially deals with whether the commissioner should be required to be either a senior judge or a retired judge. In part it also has a slightly probing quality, and again I will listen to the remarks of the Bill’s sponsor. Given where the passage of the Bill has gone so far and where it might land—the situation is slightly fluid—and although I appreciate that, for instance, the noble Lord, Lord Carlile, has made suggestions on how we could inject a level of judicial introduction to the panels, we will probably be keen to press this on Report if the issue is not resolved and we are left with the current situation.
The reason for that is that when the Bill was introduced in the Commons, one of its core elements was the judicial function and, indeed, judges on the panels. That was one of the great selling points of the supposed—and slightly self-proclaimed, I have to say—safest Bill in the world. But that position has been resiled from and, although I am sure that the Bill’s sponsor will give reasons for it, we have moved away from that core element. If we do not have that core element of a judge on the panel, do we leave a situation in which the commissioner has to be either a senior serving judge or a retired judge? Would that create a veneer of judicial impact when the core element has been taken out?
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We very much take on board the remarks of the noble and learned Lord, Lord Falconer, and others, who have indicated that we are dealing with people who may be in the very latter stages of illnesses, and as such their physical movements may be limited, which is why the amendment would specifically enable a remote appearance, so there is no question of someone having to go in for a hearing. We know that there is a lot of concern out there among disabled groups, and this is one aspect of concern to them. There can be great advantages in giving an applicant the opportunity to be seen and heard. We know, for example, that it would enable the commissioner to test out whether there has been any level of miscommunication or misunderstanding, and to detect whether the person has a level of motivation or the feeling that they are a burden, or indeed whether there has been a level of coercion that has gone unnoticed up to that point. That is the advantage of giving the opportunity for a hearing.
The UN human rights expert report on disabilities says that there can be barriers in terms of communication and accessibility for disabled people, and that a failure to adapt procedures to deal with those issues can lead to a form of de facto discrimination. That point has also been highlighted, in relation to similar legislation, by the Scottish Human Rights Commission, which has talked about the need for accessible communication and decision-making support to ensure that any request is genuine, and said that paper-based procedures can disadvantage people with cognitive, sensory or communication impairments, unless they are adapted. Amendment 496C seeks a level of reassurance and adaptation. Giving the applicant that opportunity would preserve the idea of autonomy.
I look forward to the Bill’s sponsor answering those queries. I am sure he will do so in a very kind, elegant and eloquent manner. I do not necessarily have a great deal of hope that he will adopt the amendments, but I look forward nevertheless to hearing his conclusions on my remarks.
My Lords, I will introduce Amendment 144A in my name. It is related to my other Amendments 726A and 728A, which are grouped much later and to which I do not expect to speak. I draw attention to my registered interests.
When I was at the Winton Centre in Cambridge, I led a team that produced information for patients in the NHS, and I am still involved with that. That experience underscores Amendment 144A, which has the support of the BMA. It would make the assisted dying commissioner responsible for the provision of the personalised and balanced information that patients require when making their end-of-life decisions under the Act. I know how much is involved in producing that information, how carefully it needs to be done and how controversial it can be. It therefore needs to be properly resourced, and the lines of responsibility for it must be clear.
We have already had discussion about informed consent. I think we all agree that, during the process outlined in the Bill, people need to go through the process of consent, but they also need to go through the process of shared decision-making, which is different. For both shared decision-making and consent, eligible people need to be given the risks and benefits of the different options open to them—including of doing nothing. That information has to be as personalised to each patient as possible, and presented in a way that is understandable to them. It is rightly the responsibility of the doctors to give that information to patients and to check their understanding of it through talking with them, but where do the doctors get that information?
Increasingly, healthcare professionals are provided with tools to help them. Online risk calculators help to personalise information on prognoses or the chances of an event for a patient such as the one they are talking to at that moment. Decision aids bring together all the current known evidence on side-effects, represented in easily understood ways, and patients can take these away and refer back to them while considering their decision. To give an example, for benign enlarged prostate there are two main classes of medicines and at least eight different types of surgery available to patients. I do not think a single individual doctor would know the numbers for the average effectiveness and for each of the major side-effects for every one of those 10 options. Each specialist would know the figures for two or three of the options that they offered or were familiar with: enough to consent their patients for their favoured option but not enough to help the patient make an informed choice from all the options available. To do that, they need a decision support tool which has all that information, but also more than that. That is why these sorts of decision aids are needed—and I want to give the House a sense of what is involved in making them, because it is important to understanding this amendment.
My Lords, I rise to speak briefly to my Amendment 134, which is a probing amendment. The noble Lord, Lord Weir, drew our attention to Clause 4(4), which sets out what he referred to as the functions of the assisted dying commissioner. In fact, the text refers to the “principal functions”, and my amendment suggests replacing the word “principal” with “sole”. Those functions are very extensive; they are elaborated in, among other places, Schedules 1 and 2 and Clauses 16, 18 and 49. They are, as I say, very extensive. They include in Schedule 1 a general power to do anything which may be necessary or appropriate for the commissioner to do in order to be able to carry out his functions. He is not short of responsibilities and he is not short of powers to be able to carry them out, yet in the Bill these are described as his “principal” functions.
So my first question to the noble and learned Lord is: are there are any other functions? Would anything be lost by changing the word “principal” to “sole”? Does he consider that there are secondary functions that the assisted dying commissioner has? Many of us are concerned that the voluntary assisted dying commissioner could easily become an advocate for change to the framework that we are establishing in the Bill. In particular, it may be found that some requirements set out in the Bill are irksome and difficult and take time. Of course, that is quite deliberate. The noble and learned Lord has set up a structure that is not meant to be easy to navigate, quite deliberately. This is not an easy structure to navigate and it may well be that, when the assisted dying commissioner comes out with his annual report—because he has to produce annual accounts, and I am sure that the report will contain things over and above purely financial figures—he will suggest changes and relaxations, and so forth. He cannot make those changes and relaxations, mostly, on his own—but we do not want, if we establish this Bill, to which many of us are strongly opposed, an officially paid and highly regarded advocate for the relaxation of the safeguards that we have built in to be operating out there.
My Lords, I shall speak to Amendments 135 and 436 in my name. These two amendments relate to one of the specific functions just elaborated by the noble Lord, Lord Moylan. Amendment 135 would create in Clause 4 a specific duty on the commissioner of ensuring that paperwork relating to individual cases is in order and of the right quality so that the process can proceed. As the amendment puts it, the paperwork should be
“present, complete and of sufficient standard”.
Amendment 436 would create in Clause 16 an elaboration of what that duty means in practice: that is, to request further and improved paperwork if it is not in order and, in particular, if any doubt exists over whether eligibility criteria are met.
Why are these amendments necessary? It is a very specific issue, clearly, but the commissioner has a function, inter alia, to receive documents, refer cases and so on, which is obviously crucial to the working of this process. As described, that function implicitly includes ensuring that the documentation is in order, but that is not made explicit anywhere in the Bill. The purpose of the amendments is to make that requirement explicit, and to create a clear legal duty on the commissioner to ensure that the paperwork is of a sufficient standard.
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Is this just a paperwork or process requirement? No, it is not—I will explain why. First, the commissioner has a mandatory duty to pass paperwork to the assisted dying review panel. The existing duty requires only that the paperwork exists, not that it be of the right quality, which is self-evidently a weakness. Secondly, the panel itself has to be satisfied that the various eligibility and other requirements are met, the basis for which is the documentation. How can it be confident that it is taking a good decision if there is no process to ensure that the documentation itself is of the right quality?
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My amendments therefore seek to separate the role of the commissioner, to make it much more like that of the Children’s Commissioner, who is fully independent from the agencies she has oversight of, with a director to undertake the delivery aspects of the work. These may or may not be the finally agreed terms or mechanisms, but I think the intent is clear, and I leave it open to both the noble and learned Lord the sponsor and other noble Lords to discuss other ways in which this separation of roles might be achieved.
My only other point is to draw attention to my Amendment 131, which makes it clear that, although the commissioner is supposed to be an individual who has held high judicial office, neither the commissioner nor the director is discharging a judicial function in undertaking their responsibilities under this Act. On this point, I am just a warm-up for the noble Lord, Lord Weir of Ballyholme, who will doubtless speak further to his Amendment 129 on this aspect. I beg to move.
A Minister responding for the Government in the other place said that the investigatory powers commissioner is appointed by the Prime Minister, and he, like the assisted dying commissioner, has to be a sitting or retired member of the senior judiciary. But that is a false point. The distinction between this job and the investigatory powers commissioner is that the investigatory powers commissioner deals with matters of national security—which are essentially a matter for the Prime Minister—whereas this assisted dying commissioner will deal not with matters of national security, foreign policy or anything of that nature but simply with the workings of this Bill, or this Act as it may yet become.
This a very short and simple point that I am sure the noble and learned Lord can easily agree with, because it does not damage the Bill. It is simply a technical adjustment of the route to appointment, and I urge the Committee to support it.
That is all the more appropriate when we look at the functions that have been listed for the commissioner, of which there are five under Clause 4(4). Paragraphs (a) and (b) relate to “receiving documents” and compiling a list of eligible panel members. It is hard to see why those functions, which are essentially administrative in nature, would require a level of judicial input. Similarly, paragraph (c) relates to
“making arrangements in relation to such panels”.
Again, that function lies largely within administrative competence rather than requiring any element of judicial quality.
The one area that does touch on that, as has been highlighted, is paragraph (d), which talks about the reconsideration of cases, but cases are not to be reconsidered on their own merits. The Bill’s sponsor in the other place, Kim Leadbeater, said that the commissioner is
“not acting as a judge”,
so there is a query about the level of judicial impact even of paragraph (d). Finally, under paragraph (e) there will be a monitoring role, particularly as regards medical statistics. There is a question mark in relation to that. If we are looking for somebody to undertake that role, which I think was initially put within the remit of the Chief Medical Officer, it seems to me that a medical professional is much better suited to it. There are queries about the applicability and whether we are simply creating a façade of judicial involvement by having the requirements currently in the Bill.
My Amendment 496C would afford a person, if they desire it, the opportunity of a hearing before the commissioner, rather than their case being decided by a paper hearing. That would cover aspects such as someone being registered disabled under the Act, the availability of communication, cognitive impairment and mental distress, in the interests of justice.
When we make decision aids, we work hand-in-hand with patients and members of the public, with people with visual and learning disabilities and neurodiversity, and conduct academic research into how people interpret numbers and graphics representing them. I mentioned that the needs for informed consent and shared decision-making are different. What we find when we work with people is that, when making a decision, people weigh up a much broader range of pros and cons than simply risk and benefit numbers. The information they want is not just a percentage risk, which would tend to be what doctors would be able to tell them when doing informed consent; it is also information about how to access different options, including those available outside the NHS. They want to know what would or might happen, including what a certain test actually involves and why it is done. They want to know where things would happen. They need to know what their rights and options are about things such as their right to say no to something or to have someone else with them. They want prompts for questions that they might want to ask or consider asking, and spaces to write notes for themselves to be passed on, so they do not have to repeat themselves at every appointment. All these things in one place help people who are not feeling at their best to navigate an unfamiliar medical world and have more confidence that the decisions that they are making are the best ones for them. We know from working with patients and getting their feedback that this is the sort of information that terminally ill people will need to support them making decisions around their end of life.
I describe all this to illustrate that this information needs to be very carefully put together, and I know that it takes time. It takes about a year or so to do all the background research, design and test with a range of real patients and relatives—and possibly longer in this case, because it will need to be quite personalised and kept up to date because of the geographical variations and provisions of different options provided by different providers, such as those you find in palliative care. Of course, that time and that team doing that work will need to be funded, and the final versions will need to be approved and then kept constantly up to date. That is why I have proposed Amendment 144A, to ensure that this very important job is overseen by the assisted dying commissioner; with their legal background and the current job description in the Bill, they should have the means to request the right amount of resourcing from the Government to make sure that this information is produced to the right standard and well maintained.
I do not think anyone in this Chamber or outside would disagree that having balanced, personalised information about options in a suitable format for everybody, whatever their disabilities, is critical to this Bill—and I do not think that anyone will, having heard what that takes, underestimate the amount of work that it will entail. There will be a lot of people who might want to persuade patients rather than inform them around this decision, which makes it particularly important that official information is produced carefully, overseen and kept up to date. Currently in this Bill, it is not entirely clear whose responsibility this commissioning of information provision would be. When we make them, we are commissioned by a team within NHS England, but it does not just spontaneously happen, even within the NHS. It is unclear to me whose responsibility it will be when NHS England disbands, for example, and an assisted dying service may be outside the NHS. That is why it is important that this Bill specifically assigns this critical responsibility, and the best person—the only person with the specific ability to ensure funds—appears to be the proposed assisted dying commissioner.
So I come back to the question: first of all, does the noble and learned Lord want to say whether he considers there are other functions over and above those set out in the Bill, taking account of the general power I have already mentioned? Secondly, will he give us some assurance that he does not see this role as being that of an advocate for relaxation or change?