Terminally Ill Adults (End of Life) Bill Debate

Full Debate: Read Full Debate
Department: Department of Health and Social Care
The CQC report on the Mental Health Act, published last week, told us that Black people are being detained at four times the rate of white people, and that people living in deprived areas are 3.6 times more likely to be detained under the Act than other people. I do not think that this is covered in the impact assessment. The answer to these problems is not to be found in killing people; rather, it is to be found in caring for them.
Lord Moylan Portrait Lord Moylan (Con)
- View Speech - Hansard - -

My Lords, I have four amendments in this group, three of which are closely related. They are Amendments 85, 894 and 896, the latter two of which are consequential on Amendment 85. I also have Amendment 100, but I will come back to that towards the end. I am grateful to the noble Baroness, Lady Fox of Buckley, and my noble friend Lord Hamilton of Epsom for lending their names to Amendment 85, and to the noble Lord, Lord Carlile of Berriew, for adding his name to Amendment 894

One of the concerns about the Bill is the possibility that the definition of one of the key qualifications, to have a terminal illness, becomes expanded over time—what I am going to call “creep”. I will not detain the Committee with examples from other jurisdictions, but there are examples where the scope for assisted dying has been made available to people with conditions that would hardly qualify as terminal illness and might well not have qualified as appropriate in the minds of the legislators who first put the legislation together. I think it would give the public some confidence in the Bill if they were to know that the capacity for creep was severely limited. My suggestion for limiting it is that there should be a list of what constitutes terminal illness. I am not suggesting that this list should be in the Bill; I believe it should be issued by the Secretary of State by way of regulation and should be updated periodically in the light of medical advice.

I turn now to a couple of questions I have for the noble and learned Lord, Lord Falconer, and I will then deal with some objections that might be raised. My first question concerns his own definition, in Clause 2(1)(a), that

“the person has an inevitably progressive illness or disease which cannot be reversed by treatment”.

My question to him in the first place is whether he regards “inevitably” and “progressive” as adding anything to the notion of being terminal; in other words, is each a subset of the other? Is the definition getting narrower with the addition of each of those words, or are they in fact otiose? If you left them out, would the scope of the definition be just the same? I would be interested to know his answer, although it does not affect directly what I am now going to say.

The question of the list was dealt with in the other place to some extent, and arguments were made which suggested that it would all be very difficult because people did not always die from one illness: sometimes they had two terminal illnesses, or they had complications or comorbidities. Medically, I am sure that is absolutely the case, but I do not think it is relevant to what I am arguing for, because the Bill is clear that you have to pass certain qualifications and thresholds to be considered for assisted dying. One is that you have

“an inevitably progressive illness or disease which cannot be reversed by treatment”,

but you have to have only one of them in order to qualify. You could have two, but you would still qualify—it is irrelevant. You could have one with several comorbidities, and you would still qualify. It does not matter how an individual might die in the end. What matters is their condition at a particular moment and whether they have

“an inevitably progressive illness or disease”

at a particular time—so applying the list does not seem very difficult to me.

The other objection that might be raised is that the list would be very difficult to put together because there are many illnesses or diseases, but I think this is wrong. If one considers illnesses or diseases as a way of dying, and one excludes such things as falling off a roof or some adventitious accident of that character, the diseases or illnesses on the list are all known. We know, medically, what people die of. Very occasionally, a new illness or disease of a terminal character arrives. AIDS was an example in the 1980s and 1990s. It completely shocked us, partly because it is such a rare thing for a new terminal illness or disease to arrive. Of course, my amendment would allow for the Secretary of State to adjust the list if there were such an eventuality in the future, heaven forfend. We do know what they are, and we can put them together. The Secretary of State can make a list, it will be subject to scrutiny—because, as I think the noble and learned Lord will confirm, all regulations made under the Bill have to be made by affirmative statutory instrument—and people will be able to comment. I think that would give them great assurance that creep was not going to be a feature of this. I would be grateful to hear the noble and learned Lord’s response to that proposal.

I come briefly now to my Amendment 100 in this group, which is quite different. This is genuinely probing because, when I read the Bill and got to Clause 2(4), I found a sentence that began:

“Nothing in this subsection results”.


It was strange, typographically, because it is not a new paragraph—there is not a paragraph break—but nor does it run on directly as a sentence. It has obviously been botched in at some point, probably in the other place. Anyway, these things happen. I read it, and then I read it again, and I read it over and over again. At the end of it, I still could not work out what the sentence actually means. Even if I could construe it in such a way that it did mean something, I would not know what it meant in the context of Clause 2. This is a genuine probing opportunity for clarity from the noble and learned Lord as to what import he thinks this sentence has in the clause. It would certainly please me, and I think many other noble Lords, if we understood that and whether, in fact, it should stand or be swept away. My proposal to delete it at this stage is, as I say, entirely probing, in order to hear what the noble and learned Lord has to say.

Baroness Coffey Portrait Baroness Coffey (Con)
- View Speech - Hansard - - - Excerpts

My Lords, I have tabled Amendment 73. One of the issues here is whether a disease is terminal without treatment. A simple example is type 1 diabetes. The World Health Organization classifies diabetes as a disease. That means that, under the Bill as it stands, as pointed out by witnesses in oral evidence to the Commons Select Committee, anybody who decides not to take their insulin, for whatever reason, would automatically have an irreversible disease and they will die. I want to explore through this amendment whether that is what we are thinking about.

--- Later in debate ---
I make no comment on the other amendments in this group. However, as noble Lords are aware, the amendments have not had technical drafting support from officials. Therefore, further revision and corresponding amendments may be needed to provide consistent and coherent terminology throughout the Bill.
Lord Moylan Portrait Lord Moylan (Con)
- Hansard - -

May I pursue a point the Minister made about my Amendment 85? My understanding of the Bill, as drafted, is that one has to have an inevitably progressive illness or disease, not that one has to have a six-month prognosis of one’s death. The two might be quite separate.

One might, as the noble Baroness said, have a combination of circumstances that means one is likely to die within six months without having a specific, identifiable disease. The Minister seems to be saying that the Government’s interpretation of this clause is that one does not need to have a specific, identifiable terminal illness; one simply needs to have a set of circumstances that together might result in a prognosis of death within six months.

If that is the case—and that is the Government’s view of the meaning of that clause, as the Minister seems to imply—that widens to an astonishing extent the conditions that might qualify for the Bill. I would like to hear the Minister say—and the noble and learned Lord, Lord Falconer, may possibly want to comment on this when he speaks—whether it really is their interpretation that it could be any set of circumstances that lead to a six-month diagnosis without there being an identifiable illness.

Baroness Merron Portrait Baroness Merron (Lab)
- Hansard - - - Excerpts

I will briefly look at the actual amendment. As I said in my response, the workability concerns are about the specification of a list of illnesses or diseases. I have already outlined why that would be unworkable—because it is often a combination of illnesses, as well as the complications of those illnesses, that are interacting, rather than there being just one. I referred earlier to why it would be extremely difficult. I have been looking at the specifics of the amendment, but to do what it says would create more ambiguity than there is currently. In reality, my response is covering our concerns; where I do not make a comment, there are no workability concerns.

--- Later in debate ---
Lord Pannick Portrait Lord Pannick (CB)
- Hansard - - - Excerpts

I suggest to the Minister that the answer to the noble Lord, Lord Harper, is very simple. An unfortunate person may have more than one inevitably progressive illness or disease, each of which will lead to their death within six months. It is a standard principle of statutory interpretation that the singular includes the plural.

Lord Moylan Portrait Lord Moylan (Con)
- Hansard - -

May I comment before the Minister sits down? I would hesitate to intervene on the noble Lord, Lord Pannick, because that would be quite correctly stopped by the Whips, but what he is saying is not to the point. If someone has one fatal illness that will kill them at some time in the future, such as a certain form of cancer, they may of course have another illness, say heart disease—I am not a medical person—that could equally see them off at some point in the future. Of course, that will be included in the scope—we entirely understand that.

That is not quite what the Minister is saying. She is saying that one might have a combination of circumstances, each of which might be non-fatal in itself, but that in combination they might result in a terminal diagnosis within six months. If one is frail—again, I am not a medical person—one might have pneumonia combined with certain other conditions, such that the combination could be very threatening and might lead to death within six months, but none of those instances would be fatal in itself. That seems to be what the Minister is saying, but it is not what the Bill says. There has to be an identifiable—

Lord Katz Portrait Lord in Waiting/Government Whip (Lord Katz) (Lab)
- Hansard - - - Excerpts

I am not entirely clear whether this is an intervention or a speech. If it is an intervention, it should be clearer and briefer than that, and have an actual question. Please come to the point.

Lord Moylan Portrait Lord Moylan (Con)
- Hansard - -

This has exposed something that has never been mentioned in relation to the Bill before, or in the whole of our debate on terminal illness. It is a matter of crucial importance. I know the Minister wants to dodge it, but it seems that the Government’s interpretation of Clause 2(1) is very different from what it appears to say in plain language.

Lord Falconer of Thoroton Portrait Lord Falconer of Thoroton (Lab)
- View Speech - Hansard - - - Excerpts

I pay tribute to the speeches of the noble Lords, Lord Farmer, Lord Shinkwin and Lord Shamash, all of whom referred to distressing personal circumstances. The Committee is grateful that people are willing to talk about these issues in this very difficult debate.

This group of amendments concerns the definition of terminal illness. As people have just identified, the definition of a person being terminally ill to satisfy the requirements of the Bill is that

“the person has an inevitably progressive illness or disease which cannot be reversed by treatment, and … the person’s death in consequence of that illness or disease can reasonably be expected within six months”.

I will pick up on four points that came out of the debate. First, to deal with the point raised by the noble Lord, Lord Moylan, the words “inevitably” and “progressive” plainly limit the words “illness or disease”, so the illness or disease has to be both inevitable and progressive.

Secondly, to deal with the very important point raised by the Baroness, Lady Finlay of Llandaff, frailty is plainly not within that definition. Frailty, old age or something similar would not satisfy the requirements of

“an inevitably progressive illness or disease”.

That specific point was addressed in the Commons, where the initial draft of the Bill had the words

“inevitably progressive illness, disease or medical condition”.

The words “medical condition” were removed to deal with that specific point. The words

“inevitably progressive illness or disease which cannot be reversed by treatment”

deal with the sort of example given by the noble Baroness, Lady Coffey, and other noble Lords. There will be illnesses or diseases, such as type 1 diabetes or HIV/AIDS, where there is a traditional and accepted treatment which will effectively reverse the effect of the condition. It will not get rid of it completely. You still may have HIV or be a type 1 diabetic, but the effect of the condition is reversed. The intention behind putting in the word “reversed” was to deal with those.

--- Later in debate ---
Lord Moylan Portrait Lord Moylan (Con)
- View Speech - Hansard - -

My Lords, I have Amendment 235 in this group and I shall speak briefly to it.

I shall probably be mocked for naivety. We have had some 30 years of the Mental Capacity Act. The concept of capacity has been developed in great detail, in a very specialist way. As my noble friend Lord Sandhurst said, the lawyers understand it but perhaps others do not. I am sure that he meant to say that the psychiatrists understand it too, because they have to work with it regularly. However, he is right that ordinary people do not have to engage very much with the Mental Capacity Act. I am one of those ordinary people. I bring no expertise as a lawyer or as a psychiatrist in relation to the Mental Capacity Act. I am simply thinking in this amendment of how ordinary people would regard it if they saw people who were suffering with learning disabilities, autism or mental disorders being led into assisted dying, opting for assisted dying and having that facilitated.

I have no doubt that there is some poll commissioned by Dignity in Dying which says that they would widely applaud it and that it would be a very popular thing, but I do not believe that it is true when actual cases are presented to people and they see them happening. I think that they would say that it is simply wrong that people who have these conditions should be able to access assisted dying. So my Amendment 235 takes the conditions that are specified in Clause 22: learning disability, mental disorder, autism or experiencing substantial difficulty in understanding the processes or information that is relevant. In Clause 22, we say to these people, “We’re going to help you with an independent advocate”. My Amendment 235 says that those people will not be admissible to the process, and I do it by saying that any preliminary declaration they make will be void. Under the terms of the Bill, they will not be able to proceed further.

That is what a large number of ordinary people would expect. They would want us to protect them and the best way of protecting them is to say no. I know that this offends the notion of autonomy held by the noble and learned Lord, Lord Falconer, which he is trying to adjust for these people. It might strike those who spend their lives working at the concept of capacity as being rather naive and backward of me. However, I think that it is what most people want and the safest course. If the Bill is to be implemented, it can be amended in the future if people want, but at this stage it is by far the safest course.

So I recommend Amendment 235, which would terminate this debate by making it impossible for people with those conditions to proceed. Consequently, Clause 22 becomes unnecessary. That is why I have tabled the Clause 22 stand part notice: not because I have an objection to Clause 22 in some complex way but simply because it becomes unnecessary in the Bill. It is otiose.

Lord Harper Portrait Lord Harper (Con)
- View Speech - Hansard - - - Excerpts

My Lords, I will make a few points. The first is in response to the perfectly fair point from the noble Lord, Lord Markham, at the beginning about the difference between this debate and the earlier debate we had. I think there is a very clear distinction. The earlier debate was a very wide-ranging one about capacity. Because of that debate, we now have some very specific amendments to look at, which seek to tackle some of the issues that were thrown up in that debate. The noble Lord, Lord Deben, set out why this is important: the practitioners in this area—the professionals of various types who will be involved in implementing this regime if the Bill becomes law—have been saying publicly, as well as to us specifically, that they want clarity about decision-making, so that they are clear about the legal framework that applies to them and the decision-making regime. That is very important.

I will not speak to all the amendments in the group; I will focus on a couple of points. We have already talked about the capacity issues around people with deprivation of liberty orders. The noble and learned Lord, Lord Falconer, spoke about that debate and the fact that he has—rightly—written to noble Lords setting out his intention to bring forward those amendments on Report. We have not yet seen the detail of those. I have a couple of questions, if he is able to furnish us with that information. I know he said that he was in the process of talking to officials and lawyers about that, but can he give us an indication about whether the protections he is looking at will be something like a yellow flag or a red flag? In other words, would there be a prohibition on someone who has recently been under a deprivation of liberty order so that they would not be able to qualify under the Bill? Also, can he give us confirmation that we would actually have the protections in the Bill, or would they all be left to codes of practice or guidance? Without having done the detailed drafting, if he could give us an indication of his direction of travel, that would be very helpful.

A number of noble Lords have pointed out that there is some confusion. I think that both the noble and learned Lord and the Chief Medical Officer have both said on occasion that there is a sliding scale of capacity in the Mental Capacity Act and that there has to be a higher level of decision-making capacity for more important decisions. I think Chris Whitty had to row back from that in a letter that he sent, as my noble friend Lady Berridge said. So can the noble and learned Lord set out his understanding of the position under the MCA for these sorts of decisions?

Legal experts have asserted that it is factually incorrect in relation to the Mental Capacity Act. Alex Ruck Keene KC, whom my noble friend Lord Sandhurst mentioned as being part of the CLADD group, has confirmed that, while common law may once have suggested a sliding scale, the MCA itself contains no such requirement. Indeed, that is one of the things that the amendment that they have drafted deals with. Even if there is some case law on some MCA decisions that indicates a sliding scale, there cannot be any case law that is relevant to these decisions, because it has not previously been possible for decisions about assisted suicide to have been lawfully taken. There is no case law that specifically pertains to this gravity of decision. It would be helpful to understand what the noble and learned Lord thinks is the position.

I think this is a question that the Minister is capable or answering—or, rather, able to answer—without straying into making a policy decision. Sorry, I changed my word—I was not trying to imply something about her competence at making the thing; it was more about whether she should or should not. What is the Government’s understanding of the MCA, given that the Chief Medical Officer set out one thing in oral evidence and then corrected it? It would be helpful to know what the Government’s definitive view is on this issue of whether there is or is not a sliding scale. That is a factual question that does not go to an opinion about this legislation. It would be helpful for us to know what it is.

I have a final question in this area, and then I will make one final point. One of the things that Amendment 115 is also trying to deal with is that under the Mental Capacity Act there is a support principle that effectively becomes a duty to assist. It mandates that:

“A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success”.


The danger is that the MCA was designed to help people make decisions about things such as finances, care and housing, where support is plainly benevolent. Applying the same duty to a decision to end one’s life is qualitatively different—the noble Viscount, Lord Colville, mentioned the point about how oppressive it can be if you are repeatedly asked whether you want something with this type of decision—and therefore I do not think it is appropriate. I would be interested to know whether the noble and learned Lord accepts that Section 1(3) of the MCA is effectively a statutory duty for doctors to support patients in making this decision, and, if so, whether that balance is accurate.

My final point, for a couple of reasons, is on Amendment 119 in the names of my friends, the noble Baronesses, Lady Grey-Thompson and Lady Hollins, which deals with the mental capacity assessments for people with learning disabilities. The noble Baronesses and the right reverend Prelate the Bishop of Newcastle on behalf of her colleague, the right reverend Prelate the Bishop of Lincoln, powerfully set out their concerns about whether the MCA properly tests capacity for people with learning disabilities making an irreversible decision of this kind. They set out the concerns very well, so I will not repeat them.

I emphasise one danger I can see, which is a point that one or two of them made and that my noble friend Lord Shinkwin made in his earlier contribution, about expectations. We know, sadly, that a number of professionals involved in delivering healthcare have expectations about people with learning disabilities that are not what we would expect. We should all have very high expectations of the quality of life that people with learning disabilities can have. But, just to pick one example, we know how many people with learning disabilities were treated during the Covid pandemic, when many of them were given “do not resuscitate” orders without their consent because medical professionals had taken a view about their quality of life without asking them.

I am afraid I am not prepared to just leave it to medical professionals and their professional expertise to properly safeguard those people with learning disabilities. I think we know enough from experience to know that we should properly protect people with learning disabilities, recognising that they often have capacity and are able to make their own decisions, but that they need extra protection to make sure that those decisions are the right ones. If we do not do that, knowing what we know, we will be failing them.

Amendment 119 is a very valuable one and commends itself to your Lordships’ House. It would do something that I have said on previous occasions is our job: to look out for those without voices, who are more vulnerable and who need our protection. That is not a duty that we should take lightly; it is one that we all have, and this amendment means we would be fulfilling that duty in a very clear and powerful way.