Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateLord Falconer of Thoroton
Main Page: Lord Falconer of Thoroton (Labour - Life peer)Department Debates - View all Lord Falconer of Thoroton's debates with the Department of Health and Social Care
(2 weeks, 1 day ago)
Lords ChamberThis 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.
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.
May I just finish this?
For example, the noble Baroness, Lady Lawlor, proposed 80% and two people expert in the area. The requirement of the Bill is that there should be a reasonable expectation that the person’s death will come within six months. That has to be approved by two separate doctors and a panel. Where there is any doubt about the prognosis, each or both of the doctors have to seek the advice of somebody specialist in the area. That seems an appropriate degree of safeguard.
I apologise to the noble Baroness.
I just wanted to clarify what the noble and learned Lord said. He said, as I understand it, that he did not support these amendments because they would mean that a dying person would have to make difficult decisions. Is requesting assisted suicide not a difficult decision, which they would already be taking?
Of course it is a difficult decision, but that is the decision the person has to be clear, firm and settled about. I do not see parity between the decision the individual has to make and making sure there are appropriately qualified people ensuring that the person has the disease. They seem to be two important but different requirements.
The next group of amendments, primarily advanced by the noble Lord, Lord Frost, is on the question of whether suffering should be an element in the eligibility—that terminal illness itself is not sufficient. We have had this debate a number of times, particularly at Second Reading, on some the circumstances where a terminal illness should be excluded. For all the reasons I have given in the past, I am not in favour of suffering being the requirement. What suffering is will vary from person to person. In some cases, it will be the indignity. In some cases, it will be the appalling thought of the change in relationship with those they love. For others, it will be the pain they are going through. It is not, in my respectful view, an appropriate or easily applied condition. So, for all the reasons I have given on a number of occasions before, I am against putting in the question of suffering.
The next group of amendments is that advanced this morning by the noble Baroness, Lady O’Loan. They say that if you are the victim of medical negligence, you should not be entitled to an assisted death. If, for example, your doctor failed to diagnose your condition early enough for you to get treatment and, as a result, you are likely to die earlier, even though you have the condition—for example, prostate cancer—is the position that, because of the negligence of your doctor, you are truly to be denied the right to an assisted death? Unfortunately, I cannot see the logic of that.
With respect, I did not say that you should be denied an assisted death. I said that assisted death should not be available until all compensation matters and so on have been sorted out.
I think that I have dealt with that point. I have dealt with “inevitably progressive”; I will now deal with the list of illnesses mentioned by the noble Lord, Lord Moylan. Again, I do not think that that is either practical or sensible. The state would have to identify all illnesses in a list; it might miss some, and new illnesses come. Surely it is much better that one has a definition of what the policy aim is, which is to cover
“an inevitably progressive illness or disease which cannot be reversed by treatment”.
I will indicate by an example why the noble Lord, Lord Moylan, is wrong. If you think about HIV/AIDS, how many people would have died without this option—if it had been made available—before the state would have been willing to recognise that it was a fatal condition? It would seem jolly unfair to people that you have to wait for the state to make that decision. The noble Lord, Lord Moylan, also asked for a—
I deliberately did not intervene on the noble and learned Lord earlier, because he dealt with the point and I thought that we had spent enough time on it. He has now just made it even more confusing. I just want to make sure that I have this right. The Minister appeared to be saying that you could have a set of conditions, none of which was fatal but the combination of them was terminal, and that that would trigger the circumstance. I said that that was not what the Bill said. The noble Lord, Lord Pannick, pointed out that if you had a range of conditions, all of which were fatal, that would count—I do not dispute that at all. The noble and learned Lord seems to be saying that if someone has a condition that is not currently recognised as terminal, they would qualify under the Bill. Did I hear him correctly or have I got that wrong?
The noble Lord has got that wrong. I was saying that, for example, the medical profession could easily recognise that HIV/AIDS is fatal. It would have recognised that at a particular time and that would be a medical diagnosis. The effect of the amendment in the name of the noble Lord, Lord Moylan, would be that you cannot rely on HIV/AIDS as a basis for saying that you have an inevitably progressive illness or disease that cannot be reversed by treatment, which was the position for a long time, unless the state has put it into a list of regulations. I am saying that it should be the doctor’s determination of whether theTo go on with the questions that have been raised, the noble Lord, Lord Moylan, asked what the paragraph under Clause 2(4) means. It means that the fact that you have a disability or a mental disorder that cannot justify a terminal illness does not mean that you cannot nevertheless qualify because you do have a terminal illness that satisfies the requirement of Clause 2(1).
On the question of congenital disorder and Amendment 105, if the position is that you are suffering from a progressive illness or disease that is likely to end your life within six months, I think that you should be entitled to an assisted death. My noble friend Lord Shamash referred to such a condition in relation to his cousin; I am not in favour of excluding a particular category in relation to that.
Everybody in the House has enormous respect for the noble Lord, Lord Shinkwin, and I completely accept the proposition that those of us who are not disabled have to listen very carefully to those who are. It is true that, in the other place, Marie Tidball, who is a Member of Parliament, supported the Bill and was in particular influenced by the fact that amendments were made to it that ensured that a disability group would monitor the performance of the Bill. However, I completely accept the proposition that the noble Lord, Lord Shinkwin, makes that we have to listen as hard as we can because it is not part of our experience. That proposition applies not just to this Bill but to a whole range of Bills.
On two further points, first, a number of noble Lords made the point about developments in medicine. It is true that medicine develops all the time; one needs to keep up with those developments and the doctors making the diagnosis have to have those in mind. But the fact that there are going to be developments in the future does not prevent the position from being that at a particular moment in time—HIV/AIDS is the obvious example—because those developments have not yet occurred, those diseases are going to be fatal. The fact that something may occur in the future does not prevent the judgment from having to be made.
Finally, on Amendments 97 and 98, proposed by the noble Baroness, Lady Grey-Thompson, for understandable reasons she proposes effectively a shift in the wording to be much more respectful of disabled people. I can see no reason why we should not make that amendment.
The noble and learned Lord kindly agreed to address the issue of inadvertent misdiagnosis and he said that this group of amendments led by Amendment 71 was the time to bring that up. It was pointed out at the time by the noble Baroness, Lady Berger, that 23% of six-month diagnoses of death turned out to be wrong. How does that tie in with the Minister telling us that there had to be an assumption of an 80% chance of somebody dying within six months? Can the noble and learned Lord address that problem before we finish?
First, I am saying that six months is safe for the reasons that Chris Whitty gave: six months is generally about right; it might not be right and it might be five months or seven months, but it is a proper basis on which to proceed. The statistical evidence that the noble Lord, Lord Hamilton, is relying on is about errors that are not of the massive scale that would undermine that proposition. Secondly, having just checked with my noble friend the Minister, she was not saying that it had to be 80% right. She was saying what the amendment said—I think it was in the name of the noble Baroness, Lady Lawlor—and why it was not an appropriate or workable amendment.
Lord Shinkwin (Con)
I thank the noble and learned Lord for mentioning the importance of listening. I also thank him for the fact that, in dismissing every single amendment that your Lordships have considered, he has reminded the House of the extent to which he is listening. I ask him, because he failed to address my question about filibustering, to confirm that our consideration of these amendments will not be presented as filibustering—a yes or no would suffice. Finally, I do not suffer from my condition; I live with it, despite obstacles that I encounter. I suffer from prejudice.
I apologise unreservedly for saying that the noble Lord, Lord Shinkwin, suffers from a condition. I completely accept the way in which he put it. I also sympathise with him and accept that he suffers from prejudice on a regular basis in relation to it. That is obviously a fate that he has suffered and I have sympathy for him in that respect. On the question of filibuster, my issue with the way in which noble Lords have been dealing with this is that we are now on the ninth day of Committee and we have got to Clause 2. My experience of this House is that it is able to focus on the things that—
Let me finish. We focus on the things that matter and we should not have taken nine days to get to Clause 2.
The noble and learned Lord keeps saying that we have only got to Clause 1 or Clause 2, but the reality is that over these nine days we have discussed multiple clauses of and schedules to the Bill. It is misleading to suggest that we have only done Clause 1 and a bit of Clause 2.
If that is the position, let us agree a process by which, having covered so many topics already, we can speed our process so that perhaps we can get through Committee in the next day or two.
The House has its procedures and generally stays by them. There is nothing going on during this Bill which is filibustering. It is analysis of the defects and the flaws in this dangerous Bill.
My Lords, this is an important amendment designed to ensure that persons with anorexia cannot, by not eating, put themselves into a position in which they qualify for an assisted death. I am delighted to have the support of the noble Lord, Lord Carlile, the noble Baroness, Lady Parminter—who has played a very significant part in bringing this to our attention and ensuring that we get the right answer—and the noble Baroness, Lady Hollins, who is in her place.
The matter was raised in the Commons and an amendment was agreed on Report, because everybody agreed that people with anorexia should not be able to get themselves into eligibility. Clause 2(2) was inserted, stating:
“A person who would not otherwise meet the requirements of subsection (1) shall not be considered to meet those requirements solely as a result of voluntarily stopping eating or drinking”.
That gives rise to two significant problems. The first concerns “solely”. If it was only by reason of not eating or drinking, you would fall out of it, but it might be partly because of it and partly for other reasons—which would make anorexia a means of getting you to an assisted death. Secondly, there was doubt about “voluntarily”. Is it voluntary if it is truly a medical condition?
The amendment that I and those supporting me are proposing is intended to deal with both issues. It says that where
“a person does not eat or drink, or limits their eating or drinking, because of a mental disorder, and … their not eating or drinking, or limited eating or drinking, causes them to have an illness or disease, the person is not regarded for the purposes of this Act as terminally ill”,
so it does not have to be the sole reason. I believe that this is workable and does what I think everybody in this Chamber would want—to exclude people with anorexia from making themselves eligible.
Since that amendment was tabled, an amendment has been tabled in the name of my noble and learned friend Lady Scotland of Asthal, supported by my noble friend Lady Berger, which would put in before
“because of a mental disorder”
in my amendment “either voluntarily or”. That would cover every possibility.
I am keen to accept the amendment to my amendment tabled by the noble and learned Baroness, Lady Scotland, and the noble Baroness, Lady Berger. I invite the Committee to agree my amendment today. I will not put it to a vote, but if the Committee thinks it is the right course to take, I invite noble Lords, in accordance with acceptable practice in Committee, to agree on the nod that it goes in today. I beg to move.
My Lords, I am grateful to noble Lords for their contributions to this debate. Amendment 87, tabled by my noble and learned friend Lord Falconer, the sponsor of the Bill, would clarify the intention of the current Clause 2(2), which is to prevent someone becoming eligible for an assisted death due to an eating disorder. Amendment 87 replaces Clause 2(2). The Bill’s sponsor in the other place indicated that they would look to improve the clarity on who is and who is not eligible in this clause. The noble Lord, Lord Harper, asked about interpretation. I hope those comments will be helpful, because the eligibility of people with eating disorders under the Bill is, of course, a policy decision, not one for government. I am sure that my noble and learned friend heard the noble Lord’s point.
This amendment, as is usual practice, has been drafted with the technical support of the Government, within the policy intent of the sponsor and of the other place. The amendment excludes from the definition of “terminally ill” any illness or disease caused by the person not eating or drinking, where not eating or drinking occurs as a result of a mental disorder. It also makes it clear that this expressly covers cases of limited eating or drinking. Given that Amendment 87 replaces Clause 2(2), if noble Lords accept it, a number of the other amendments in this group will, of course, fall away.
I turn to detailed comments on amendments that the Government consider have major legal, technical or operational workability concerns. Amendment 89, tabled by the noble Lord, Lord Polak, would lead to a person not being considered terminally ill under the Bill solely as a result of withdrawing medication, hydration or life-sustaining devices. Amendment 91, tabled by the noble Baroness, Lady Finlay, would mean that those whose refusal of nutrition is due to a mental illness would not be considered terminally ill under the Bill.
Amendment 92, tabled by my noble friend Lady Debbonaire, would exclude a person from eligibility if their terminal illness was
“solely as a result of standard medical treatment being refused or withheld”.
This amendment could have the potential undesirable impact of undermining a person’s autonomy and right to make informed choices about their own medical care. The definition of “standard medical treatment” is unclear here: the exclusion from eligibility could apply to a patient who refuses one standard medical treatment in favour of an alternative standard medical treatment. A refusal of standard medical treatment would mean that a person would become ineligible for ever, even where their refusal had no impact on their prognosis.
Amendment 101, tabled by the noble Baroness, Lady Parminter, would prevent people with physical effects or complications of a mental disorder being eligible for an assisted death. This may be difficult for clinicians to apply, as “physical effects” is an undefined term. The current drafting also layers a “for the avoidance of doubt” provision on top of another “for the avoidance of doubt” provision, which could lead to ambiguity about how the legislation should be interpreted. I heard the noble Baroness say that she was concerned about the drafting, so I hope those comments will be helpful to her.
Amendment 103, tabled by the noble Baroness, Lady Fox, would remove from eligibility people who, because of the effect of a mental disorder, refuse life-saving treatment and develop a terminal condition. Where amendments limit eligibility for specific groups, they could give rise to legal challenge under Articles 2 or 8, with Article 14, of the ECHR if such restrictions are not objectively and reasonably justified. As I have said, it is for noble Lords to consider the amendments in that light, should they wish to.
First, I detect that the mood of the Committee is that I should put my Amendment 87 into the Bill, but subject to the amendment tabled by the noble and learned Baroness, Lady Scotland, and by the noble Baroness, Lady Berger, so I am minded, unless anybody indicates to the contrary, to let that process go ahead. I accept that, in putting it in, there are those who would like to build on it on Report, but I think we should put it in now.
I will deal very quickly with the other amendments in the group. Amendment 88, tabled by the noble Baroness, Lady Grey-Thompson, would leave out “solely”.
I completely agree with the noble and learned Lord, and I would be happy for the amendment to be made, but he said that he recognises that there are those who would want to build on it on Report. Can he cover the point I made? Obviously, he will have the support of draftspeople and policy officials from the department to help him craft something. Does he recognise that there is still a gap in dealing with some other eating disorders? Will he bring forward some amendments or will he expect those to come from others?
Two groups of eating disorders were identified. First, the noble Baroness, Lady Finlay of Llandaff, identified people who eat only one particular thing. I myself have experience of fruitarians and the consequences of eating only fruit—it may be very bad. Those who have a limited, particular intake are covered by Amendment 87.
A separate group, the bulimic group, gives rise to different sorts of problems. I will consider the position of bulimics, but I do not want to create any expectation that that would lead me to table any further amendments. It may be that other people will table them in the light of what I have said, in which case I will of course consider them, but I think that might be a slightly different category.
Would the noble and learned Lord consider the T1DE group? Eating disorder charities recognise not only that this is a serious group but that it has a very high mortality rate.
Of course I will consider it.
Amendment 88, in the name of the noble Baroness, Lady Grey-Thompson, is an amendment to Clause 2(2), which will go, in the light of Amendment 87. Amendment 89 is in the name of the noble Lord, Lord Polak, but was spoken to by the noble Lord, Lord Empey, who is, sadly, not in his place. It would make ineligible those who withdraw
“medication, hydration, or life-sustaining devices”.
Hydration is covered already by Amendment 87, which is coming. I am not in favour of the changes in relation to withdrawing medication or life-sustaining devices because, as I said on the first group, it is generally for the patient to decide what treatment to have. If, for example, they do not wish to have a difficult further round of chemotherapy, they should be allowed to make that choice. If, for example, they have MND, and they wish to be taken off the respirator, they should be allowed to do so as well. Unfortunately, I therefore do not support those amendments.
Amendment 91, tabled by the noble Baroness, Lady Finlay of Llandaff, which would insert
“where the refusal of nutrition is a result of mental illness”,
is now covered by Amendment 87.
Amendment 92 would insert:
“A person who would not otherwise meet the requirements of subsection (1)”—
that is, the definition of terminal illness—
“shall not be considered to meet those requirements solely as a result of standard medical treatment being refused or withheld”.
I dealt with that in a previous group. If it is a case of type 1 diabetes or dialysis then you do not make yourself eligible by refusing that. I do not think that any further change is necessary.
Amendment 101, in the name of the noble Baroness, Lady Parminter, would insert:
“For the avoidance of doubt, the physical effects of a mental disorder, such as an eating disorder, would not alone make a person eligible to meet the conditions in subsection (1)(a) and (1)(b)”.
That is what provoked the change in Amendment 87. I appreciate that the noble Baroness, Lady Parminter, is the person responsible for the change, and that she has supported our amendments.
Finally, Amendment 103, tabled by the noble Baroness, Lady Fox of Buckley, addressed those who would refuse treatment as a result of a mental illness, and then that refusal leads them to be eligible. I am not in favour of the amendment for two reasons. If you have refused treatment because of a mental illness, you would not have had capacity to refuse treatment in the first place. Suppose that, as a result of a mental illness, you ended up not getting treatment for something and now, with complete capacity, your cancer is much worse than it would otherwise have been. Should you be denied an assisted death if it is otherwise available? In my view, you should not.
I endeavoured to keep my remarks brief, and I believe I did so, taking under five minutes. The point of the amendments is very specific, around eligibility, which we had not discussed. We talked more broadly about the concerns around the Mental Capacity Act, but not specifically in the context of capacity. Obviously, we listened closely to the sponsor of the Bill’s response to the earlier debate, and the point raised in these amendments was not in any way addressed. These are additional points, beyond the principle and the wider concerns about people who are under deprivation of liberty and those who will be considered under the Mental Capacity Act. Clearly, we have listened to the experts, who have raised many concerns about the Mental Capacity Act, but the purpose of these amendments is to address eligibility.
I hope that the sponsor of the Bill will give us some more colour and detail about amendments he might come forward with on Report. But we have been in Committee since the middle of November, and in the absence of anything so far coming forward from the sponsor on the Mental Capacity Act and deprivation of liberty safeguards—I think this speaks to the concerns of many in this House—we are therefore compelled to bring forward these amendments to raise these issues. If something did come forward, that might enable us to withdraw future groups of amendments altogether, and maybe that will be the case. I look forward to the sponsor’s response.
It may assist in the light of that exchange if I indicate what my position is. We had a debate some weeks ago about the question of people who had had their liberty deprived within the preceding 12 months. That would obviously include those who were still the subject of a DoL order or a DoL application, and the noble Baroness’s amendment refers to a number of other categories as well, which are similar and which I think would be included. I indicated explicitly in the debate that I think it would be appropriate for me to bring forward explicit extra protections in relation to those people, and in particular, those extra protections might include a specific compulsory further psychiatric examination for that purpose. I have been in discussions with various people in the House in relation to that, and I am seeking advice from officials and others so that I will be able to bring forward proposals on Report. I hope that very much helps my noble friend Lady Berger.
My Lords, as a consequence of our earlier debates, as the noble Lord, Lord Markham, said, we know that in the context of applications for assisted suicide, the Mental Capacity Act, which is to be used for determining capacity, would permit an unwise decision—we have all agreed on that—even if driven by depression, loneliness or despair. We know that it would treat brief retention of information as sufficient even when the Bill requires a clear, informed and settled wish, and even though we know that, in cases of dementia, 76% of patients who refused life-saving treatment while delirious have no memory whatsoever of having done so 24 hours to 72 hours later.
Another study found that more than 60% of patients who voiced a wish to die during a bad day had no recollection of it when mood or cognition improved. People who cannot retain or consider information on their choice the day after making it will not be able to avail themselves of the cooling-off period, which is for contemplation about what is proposed. They will be in a very dangerous position, especially if their particular condition leaves them suggestible to options offered to them by those who care for them professionally, in whom they will probably place great trust.
The Mental Capacity Act also imposes a duty to support decision-making, which in this context risks becoming a duty to facilitate a decision to die. The Mental Capacity Act says that capacity expressly includes making an unwise decision, even if it would be irreversible and total self-harm. Alex Ruck Keene said in giving evidence that “if you simply read across the Mental Capacity Act, there is a duty on all the people carrying out the assessments to seek to support the person to have capacity to end their own life.”
We also know that it will rely on time-specific capacity, despite the Bill requiring consistency across all these stages, from one, two, seven, eight and so on. The reality is that the only one that requires an interaction between the doctor and the patient is the first one. The rest of them are exercises that may not involve any consultation with the patient who is making the application, let alone a face-to-face engagement. The Bill purports to introduce a statutory framework for determining capacity, but it does not do so in reality because the MCA is designed to test when a person cannot make a decision, not whether someone is capable of doing so. I hope that the noble and learned Lord, Lord Falconer, will accept the intent of these clear and effective—
The noble Baroness suggested that the only interaction will be with the first doctor. She will be aware that Clause 12 requires both doctors to examine and have discussions with the patient and she will also be aware that, under normal, though not all, circumstances, the panel must speak to the patient—unless there is an exceptional reason why they should not.
Those are both qualified as exceptions. I will carry on.
It is exactly the same for the co-ordinating doctor and the independent doctor. I am not clear what distinction the noble Baroness is making between the two. Perhaps she can explain to the Committee.
I will revert to the Bill and come back to the noble and learned Lord in due course. If I am wrong, I apologise.
The noble and learned Lord has committed, in your Lordship’s House, to build special protection for those currently or recently subject to a deprivation of liberty order, as raised by the noble Lord, Lord Markham, but the detail has not emerged. What will the specific protections be? Will there be an outright ban for those, for example, under DOLs or in prison? In Committee on 16 December, the noble and learned Lord said that, where somebody has made an application that a person’s liberty be taken away because they are seriously mentally ill or lack capacity, or a person has actually been deprived of their liberty, special provision should be made. I know the noble and learned Lord has said he will make provision, but time is passing and we still have no indication what that provision must be.
Previously, on behalf of the Government, the Minister noted that denying those under DOLs access to assisted dying might later be interpreted by a court as a breach of ECHR obligations. I would like to ask the Minister what the Government’s view is as to the minimum protection that must be offered to those deprived of liberty and susceptible to suicidal ideation if the Bill is to be compliant with the Government’s obligations under the Human Rights Act and the ECHR.
The presumption of capacity in the Bill may result in the acceptance of unwise decisions by those who will have forgotten about them the very next day. We know that clinicians and practitioners want clarity and certainty; they do not want to be left repeatedly in situations in which they must exercise their discretion. All the professional bodies have told us that. The risk of litigation, or intervention by a regulator or the police, would inevitably exercise the minds of those who act professionally. Without clear rules, the system cannot work; things will fall apart.
The Bill provides for a period of reflection once a decision is made to allow someone carefully to consider the choice involved, weighing all the information again and thinking over this life or death choice. The noble and learned Lord and the Chief Medical Officer have claimed that the MCA requires a higher threshold for life and death decisions. Legal experts, including Alex Ruck Keene KC, confirm that the Act contains no such stipulation; it does not provide a higher threshold.
My Lords, I am grateful to the noble Viscount, Lord Colville, for having spoken so clearly and eloquently to Amendment 115, which I tabled because it was suggested by the Complex Life and Death Decisions group at King’s, with particular input from the eminent national expert on mental capacity law and practice, Professor Alex Ruck Keene KC.
The amendment aims to provide clarity for doctors who are going to make the decisions as gatekeepers on the process. The amendment is necessary for two reasons. Let us remember that the Mental Capacity Act was written to prevent someone from doing something to you that you did not consent to. When you are unable to decide whether or not somebody can do something to you, you fall into the best interest decision framework, but that will never apply in this situation.
The amendment is necessary, first, to comply with our obligations under the ECHR and, secondly, to make the test of capacity enshrined in the MCA fit for purpose within the scheme of the Bill. The amendment is compatible with the Mental Capacity Act. It would not create a different process but would clarify that the point made in the letter from Sir Chris Whitty, following his evidence, is adhered to. He said that
“there is a clear need to have capacity for the particular decision that is to be taken. It follows that the more complex the decision the more the individual will need to be able to weigh the consequences and an assessment of their ability to do this is a key part of assessing whether or not they have capacity”.
We must not lose sight of the fact that the decision to take one’s life is the most momentous decision and is irreversible. It therefore requires a higher standard than the myriad other decisions that people take in the context of health and social care or finance.
The state’s obligations under Article 2 of the ECHR are to
“prevent an individual from taking his or her own life if the decision has not been taken freely and with full understanding of what is involved”.
That was the verdict in Haas v Switzerland in 2022. The amended Clause 3, as tabled, would discharge the state’s obligations by ensuring proper consideration of their capacity and that they have a full understanding of what the receipt of assistance in dying involves. However, the MCA does not work in the context of the Bill, as it would mean that unresolved doubt would compel the conclusion that the person had capacity to decide to end their life and oblige those assessing the person to support the person in that decision.
Amendment 115 would maintain the test of capacity with which practitioners are familiar but enable them to apply that test within the framework of the Bill. It would therefore constitute not a further hurdle but an appropriate framing. It borrows language from the MCA where appropriate, as in subsection (2). That language is familiar to anyone who has used the Mental Capacity Act. Like other amendments in this group, it would remove the inherent dangers of the presumption of capacity that others have spoken of.
I apologise for interrupting. Just so that I am clear, is the noble Baroness, Lady Finlay, making the point that if we use the provisions of the Mental Capacity Act to determine capacity for assisted dying, we are breaching the ECHR? I think that that is what she is saying.
The noble and learned Lord is correct that that is a challenge that has been put forward—that, as the Bill is currently written, that may be the case, but Amendment 115 would correct that.
I am sure that both I and my noble friend will be very pleased, together or separately, to reply to the noble Baroness.
I shall deal with the issues raised in this debate under the following heads. First, what is the correct test and legal framework to apply in relation to mental capacity? Secondly, how do we deal with the question of particular conditions that people have? Does it make it inappropriate, or should there be exceptional protection? Thirdly, what about Clause 22, which is the independent advocate provision?
First, on capacity, as noble Lords know, the Bill provides that the tests under the Mental Capacity Act 2005 shall be applied to determine whether or not the person seeking an assisted death has the capacity to make such a request. Remember as well, for what it is worth, that, in addition to having the capacity to make that request, the person, in order to get an assisted death, also has to have a clear, settled and informed wish to end their own life, and has made that decision to end their own life voluntarily and has not been coerced or pressured by any other person into making it. Those last two protections—a clear, settled and informed wish, voluntary and no coercion—are separate from the question of capacity.
The question of capacity is: is that person capable of making the decision? The Mental Capacity Act, which has been in force for approximately 20 years, starts from the assumption that a person does have capacity to make a particular decision, and only if it is shown that the person does not have that ability are they not able to make that decision themselves.
Should we change that assumption? There are two big proposals in front of us. First, there is Amendment 115 in the name of the noble Baroness, Lady Findlay of Llandaff, and supported in particular by the noble Viscount, Lord Colville of Culross, who made a speech in favour of it. Subsection (1) of that proposal says:
“In this Act, a person has capacity to make a decision to end their own life if they do not lack capacity to make that decision, and references to “capacity” are to be read accordingly”.
I shall read that again for those who did not get it first time round. In this Act, the proposal is that
“a person has capacity to make a decision to end their own life if they do not lack capacity to make that decision, and references to “capacity” are to be read accordingly”.
That looks almost identical to the existing provisions, and I am quite unable to see what the difference is that is being proposed.
May I go on with this amendment? I want to finish before the noble Baroness comes in.
The bulk of the amendment, or at least a lot of it, is similar to what is already in the Act. A number of questions are spelled out in subsection (6) of the draft; for example, there should be discussion of the
“relevant and available care and treatment, including palliative care, hospice or other care”.
What is being said is that in testing capacity there has to be consideration of all the detailed factual material that might be relevant to such a decision. Noble Lords will recall that both the co-ordinating doctor and the independent doctor have to consider and discuss with the patient almost all those issues. For example, they have to
“explain to and discuss with the person being assessed … the person’s diagnosis and prognosis … any treatment available and the likely effect of it … any available palliative, hospice or other care, including symptom management … the nature of the substance that is to be provided”.
The point I am making is that the difference between what the noble Baroness, Lady Finlay, is proposing in her amendment and the existing law on mental capacity looks incredibly thin. The difference is very slight.
Secondly, and separately, any reasonable person going through this would have to discuss what the consequences were of an assisted death, but that is already provided for in the Bill. I ask the question: is it sensible for there to be two similar but different capacity tests operating in the context of both the health service and what the panel has to decide?
Sir Christopher Whitty said that he was concerned about the idea of two different fine legal distinctions applying, particularly, as he emphasised, because the decision on capacity would be a different question—for example, someone in one room deciding, “Should I have an assisted death?” and in the next room, someone making the decision, “Should I have the ventilation removed in the later stages of my motor neurone disease?” The noble Lord, Lord Wolfson, who I am glad to see in his place, has made the distinction between an assisted death on the one hand and the removal of treatment on the other, but, for the patient involved, both involve the certainty of death.
In my view, having listened very carefully, read a lot about this and talked a lot about it, the idea that two separate tests should apply is damaging, confusing and wrong. Although it is helpful because it is detailed and sets out what the noble Baroness has in mind, I am not in favour of that particular change to the Mental Capacity Act. Yes, there are problems around its enforcement, and it is patchy in its enforcement, but we are talking about the legal framework within which the decision has to be made.
The other aspect of this has to be: will it be properly enforced? People are saying, “It won’t be properly enforced—look at the way decisions are made, sometimes badly, now”. The magnitude of the decision that is being made is why we have a co-ordinating doctor, an independent doctor and then the panel making sure at every stage that the position has been dealt with.
May I finally ask the noble and learned Lord my questions? I waited until he had finished. Does he recognise that the Mental Capacity Act has no test at its start because the starting point of the Act is that there is a presumption of capacity? The danger is in the overpresumption of capacity. That is why the wording in the amendment uses the language of the Mental Capacity Act to close that gap and avoid the chasm of presuming that there is capacity when there is not.
I gave the example of those with frontal lobe disorder, but we also see disordered thinking in people who have severe electrolyte disturbance. That can be corrected, but the problem with frontal lobe disorder is that it is usually irreversible—
May I finish my list of questions and then the noble and learned Lord can come back? Can he write to us to tell us who Chris Whitty spoke to before giving evidence to the committee that the Mental Capacity Act is adequate? If he spoke to the CLADD group and those involved in the National Mental Capacity Forum, I am surprised that they would have said it was adequate, because they are the people who were particularly concerned about that clause and felt that this should be corrected.
All right, I will stop there and come back in afterwards.
First, in relation to the noble Baroness’s analysis of the Mental Capacity Act, Section 1 says that you shall be assumed to have capacity unless you do not have capacity and Section 2 says, broadly, that you do not have capacity if you are not capable of making a particular decision. The law and, I believe, practitioners, have found that a perfectly adequate framework within which to operate.
Secondly, on the example the noble Baroness gives about frontal lobal problems, this is a problem not about presumption but that, in certain cases, capacity is difficult to identify. That has to be addressed under the Bill, because the two doctors and the panel have to be satisfied that there is capacity. As it happens, they also have to be satisfied that it is the firm and settled view of the person that that is what they want.
Baroness Cass (CB)
I would never come at the noble and learned Lord, for whom I have the greatest respect. We de facto have to make changes to the Mental Capacity Act in the application of this, because, where a person does not have capacity, you make a best interests decision, but, clearly, we are not doing that in this case, so we are already deviating from how the Mental Capacity Act would work normally in relation to medical procedures. Where you think the medical procedure is the right thing, either the patient makes that decision or someone else would make it for them in their best interest, so we are already deviating.
Secondly, people will be trained specifically to carry out this work, so we have four years to train people to do this appropriately. I do not think slightly different training in this setting, compared to capacity in other situations, would be too burdensome for practitioners.
On the Act not applying, the noble Baroness is absolutely right that best interests never come into it, because if the patient does not have capacity, that is the end of the matter and they cannot have an assisted death. It is worth pointing out that the Bill says:
“In this Act, references to a person having capacity are to be read in accordance with the Mental Capacity Act 2005”.
All this Bill is incorporating is the reference to capacity, not the second half of the Mental Capacity Act, which sets out what happens if you do not have capacity.
Baroness Lawlor (Con)
If the noble and learned Lord is not going to write to Sir Chris Whitty to find out further, can he remind us to what evidence he referred when he gave his judgment that the Mental Capacity Act 2005 was suitable for the purposes of this Bill?
He gave evidence both to the House of Lords Select Committee and the Commons Select Committee, where he gave his opinion that having two different tests for mental capacity was a bad idea. He gave as a particular reason for that the fact that it would be inappropriate and difficult for doctors to apply the capacity test in one room about the withdrawal of treatment and in the other about an assisted death. That was the material he relied on. We are each capable of evaluating that argument for ourselves. If the noble Baronesses, Lady Lawlor or Lady Finlay, would like to interrogate him further on that, be my guest.
My Lords, I said I would come back. For the information of the Committee, I have had confirmation that Chris Whitty did not speak to the chair of the National Mental Capacity Forum before giving evidence. He may have bypassed her—so be it.
However, there is another aspect. The doctors doing the assessments are going to be trained; it will not be just any doctor, anywhere, doing these assessments without specific training. If they are going to be trained, it is difficult to understand why the noble and learned Lord does not think that we should make sure their training is as watertight as possible and that they are as best equipped as possible to assess capacity, which may be at a higher level than other doctors who are not involved in this process.
I do think they should be properly trained—I am very strongly in favour of that. But, with the greatest respect to the noble Baroness, Lady Finlay, that appears to be a completely different question from what the right legal framework should be. That is what we are talking about here.
Could the noble and learned Lord clarify whether or not the legal framework we are talking about in the Bill is to be applied by the assessing doctors?
The framework that is to be applied by the co-ordinating doctor and the independent doctor is the framework for assessing capacity under the Mental Capacity Act. That is what the Bill says, and I am resisting the changes in Amendment 115, in the name of the noble Baroness, Lady Finlay.
The noble Baroness, Lady Hollins, is proposing something rather different from that which the noble Baroness, Lady Finlay, is proposing. She proposes that the Secretary of State must, by regulations, establish a framework for the assessing and determination of capacity; that having capacity is to be read in accordance with that framework and not the framework under the Mental Capacity Act; that regulations must involve setting out an evidence-based methodology; and that any assessment must be conducted by a practitioner psychologist who holds particular qualifications and requires the use of validated, standardised instruments capable of detecting subtle or partial impairments in cognition, reasoning or decision-making capacity.
I understand from the speech that the noble Baroness made, and from her splendidly detailed amendment, that particular specialists applying a different regime from that which already applies, with specialised tests, should be the only people who can give a capacity assessment here. Again, in my respectful submission, that falls foul of the same arguments that I advanced before. The first of those is that the Mental Capacity Act is tried and tested in dealing with the question of whether someone is able to make the decision. Secondly—and I am glad the noble Baroness, Lady Finlay, gave me the opportunity to answer this—the co-ordinating doctor and the independent doctor will require training, and the panel will have experience in making these decisions. Thirdly, they will be making decisions having received proper advice.
A bespoke decision-making framework would initially be legally untested, but the same is true of the Mental Capacity Act, which, as my noble friend Lady Cass said, has never been operationalised or judicially tested in the context of assisted dying. The idea that the two doctors involved would be trained ignores my point that this kind of complexity is not something that can be learned simply through an extra little module. It requires years of experience to help people develop the understanding and ability to make these kinds of assessments. Further, the existence of bespoke decision-making frameworks is not novel in UK law. The Mental Health Act already operates in power over the Mental Capacity Act, recognising that certain contexts require a different approach to decision-making.
I do not want to be disrespectful, but that was just a repeat of the speech that has already been made and it did not contain a question. I completely respect the arguments of the noble Baroness, Lady Hollins, but she should really only ask me questions, rather than make a speech in the middle of my speech. I apologise for having to say that, but she has not asked me a question.
Let me frame it as a question then. Does the noble and learned Lord agree that there are already bespoke decision-making frameworks and that this is not novel in UK law?
I agree that there are bespoke decision-making processes in existence. It is not the law; it is how it works in practice. Through codes of practice, it will be possible to develop appropriate methods of dealing with it.
Baroness Lawlor (Con)
I have difficulty with the noble and learned Lord’s answer in respect of the Mental Capacity Act. He is absolutely right to say that, if you do not have capacity, you cannot avail yourself of this, but the Mental Capacity Act also says that you should not be judged not to have capacity if, to paraphrase, you cannot retain relevant information over a period of time, as referred to in Amendment 107, from the noble Lord, Lord Hunt, or, as referred to in my amendment, you can understand relevant matters in simplistic, visual or other ways appropriate to you. To my mind, that suggests that the Mental Capacity Act, in making exceptions about having capacity, is actually unsuitable for this. We hear all the time about the earlier part—and the noble and learned Lord is absolutely right—but it is those exceptions to the judgment on having capacity that worry me. They are not suitable for this. Will the noble and learned Lord explain why that inconsistency in judging capacity is suitable for the measure that he is proposing?
I am not sure that I followed the subtlety of that question. The Mental Capacity Act 2005 is a tried and tested framework, which seeks to ensure that someone—a doctor, for example—has to make a decision about whether a patient is capable of deciding to withdraw from treatment. The doctors will be experienced in doing that and the legal tests have worked over the years. The noble Baroness, Lady Finlay, is right when she says that they are frequently not applied in the correct manner, but in this Bill the key thing is that there are safeguards so that those particular problems will not apply. That is why I am espousing quite strongly keeping the same test for the assisted dying Bill as in the rest of medicine.
I have a practical question. What, then, is the noble and learned Lord going to offer us?
I am not offering anything in the way of a different framework in relation to this. I am more than happy to discuss with people what sort of code of practice there should be. I say that not because I have not been listening—I have been listening as hard as I possibly can; but listening does, from time to time, involve disagreement as well. I apologise for disagreeing, but I do disagree with the two big schemes that have been put by the noble Baronesses, Lady Finlay and Lady Hollins.
The noble Baroness can tell them that they will be safe. The question that she is raising in relation to such people is whether they will be overpressed to have an assisted death. My answer is that they will not, because they would have to satisfy a co-ordinating doctor, an independent doctor, a panel consisting of an ex-judge or a King’s Counsel, a psychiatrist and a social worker. In my view, this will provide him with protections. If the noble Baroness has the opportunity to speak to him, I very much hope she might tell him that there are those protections.
I am very aware of the fact that in normal day-to-day interchanges with various parts of the systems, both health and legal, there are those who may make disabled people feel that their lives are not sufficiently valued. Of all the interactions with the health service, however, this is the one that will be most protected. And by most protected, I mean giving most safeguards to somebody in Tommy’s position.
I should probably get on if we want to get away. I move to the question of the various conditions: this is the position of the noble Lord, Lord Moylan. He is asking whether we might just exclude certain conditions under the Mental Health Act, such as autism and learning disabilities. Many of these people will not be able to get an assisted death because they will not satisfy the capacity test, or they will not satisfy the requirement for it to be their firm and “settled” view. I do not believe that they should be excluded altogether in relation to that because, as pointed out by the noble Baroness, Lady Coffey, such a wide range of conditions are covered by the Mental Health Act. Autism covers a very wide set of circumstances. Is it right that everybody who is autistic should not have that right? Learning disabilities includes people who are dyslexic, for example. If that right is available to people, should it not be available to people who are dyslexic? I am not in favour of the suggestion made by the noble Lord, Lord Moylan.
I turn to the important point raised by the noble Lord, Lord Sandhurst, who draws our attention to Clause 25. This deals with the position at the moment of providing the assistance—that is, when the drugs are provided. It says:
“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided … has capacity”.
The noble Lord, Lord Sandhurst, raised the question of what happens if he has doubts in relation to it. The answer is that he cannot be satisfied and that is the end of it. He has to be “satisfied”: that is the word used.
I turn to whether Clause 22 should stand part. As noble Lords will know, I have proposed a new Clause 22, and there is considerable detail in relation to it. It would be wasting the Committee’s time for me to talk about the existing Clause 22 when there is already available a detailed Clause 22.
Lord Goodman of Wycombe (Con)
I apologise to the noble and learned Lord if he has already answered the question about my amendment. I would be grateful if he would clarify his view of Amendment 113 in relation to the code.
If that is a reference to whether there should be the affirmative rather than the negative procedure, may I take it away? That seems a reasonable request. May I get back to the Committee on that?
My Lords, we have debated for just over two hours and some very significant issues have been raised. It is worth outlining briefly why this group matters, particularly in the context of what is happening beyond this place and considerations and representations being made in the media.
It was last week that Esther Rantzen told us that the Bill
“only applies to terminally ill people like me”.
The campaigners we hear from reassure us that it would obviously be something that they “freely choose and have fought for”. There are noble Lords who said at Second Reading in this place:
“I want that choice for myself”.—[Official Report, 12/9/25; col. 1786.]
It centres those who have no doubts about their capacity to make this decision and no doubt that they would freely choose, but it removes from the room people who are not like us. It is our job to balance the needs of those with true agency, for whom this will be a free choice, with those who may be pressured or led towards this path, in particular because of the inadequacies of the Mental Capacity Act.
It is clear that there remains significant concern about the relationship between the existing test in the Mental Capacity Act, brought forward in 2005, and the decision to have an assisted death under the Bill. At the risk of stating the obvious, a decision to have an assisted death was not in contemplation for the architects of that Act back in 2005, so it is not surprising that we have heard such a range of questions and concerns, both from noble Lords and from experts outside this Committee, including the Royal College of Psychiatrists.
I listened closely to my noble and learned friend’s remarks to the noble Baroness, Lady Finlay. It may be helpful for noble Lords to be aware that, back in the other place, the desire to use the Mental Capacity Act was largely pragmatic as it is what doctors are used to, not because it is the best framework for this decision. I reflect on the comments from the Health Minister, Stephen Kinnock, who said in the Commons that it is “a known quantity” and a well-established piece of legislation. He went on to say that doing things differently would cause “operational challenges and confusion”, and that a different approach would add complexity. This bunch of amendments has pragmatic, specific proposals for adjustments to address what we are trying to do within the constraints of the legislation. Perhaps this would have all been ironed out if we had gone through some proper pre-legislative scrutiny, as we would have done had this been a government Bill.
In particular, I acknowledge the expertise of the noble Baronesses, Lady Hollins, Lady Cass and Lady Finlay, in this debate. The debate has raised some serious questions about what these specific provisions of the Mental Capacity Act mean for the weakest and most vulnerable: the endorsement of unwise decisions; presumption of capacity; brief retention of information, and whether that is sufficient; a duty to support decision-making, which risks becoming a duty to facilitate a decision to die; and relying on time-specific capacity.
I have in front of me so many different important points raised by noble Lords from across the Committee. In the time we have available, I am not going to mention all of them, so I hope noble Lords will forgive me for that, but it is worth reflecting on just a handful. The noble and learned Baroness, Lady Butler-Sloss, raised the very important concerns about people with variable dementia and people who are sectioned. The right reverend Prelate highlighted the biases experienced by people with learning disabilities and the discrimination they face. The noble Baroness, Lady Finlay, talked about the need for clarity for doctors and how we can at least endeavour to make the Mental Capacity Act fit for purpose in the Bill. The noble Baroness, Lady Cass, reminded us all that assisted death is not a medical treatment. I again reflect on the important representations from the noble Baroness, Lady Grey-Thompson, on the concerns raised by the disabled community and the particular challenges not addressed in the Bill.
Given that my noble and learned friend Lord Falconer indicated in his response that he will defend the Mental Capacity Act as the foundation for the Bill, it is disappointing that he has dismissed the specific provisions that could be set aside and could make a difference. I welcome his earlier intervention, when he said that he would bring forward amendments that would introduce additional assessment in particular cases, but that question is different from the one being asked today, about how we can be confident that the test itself is the right one.
I was particularly concerned by my noble and learned friend’s response to the question from the noble Baroness, Lady Grey-Thompson, about whether a disabled person would be safe. He said that no one would be overpressed into making a decision to end their life. I think that, for many of us here, it is not about being overpressed: we do not want anyone to feel pressed at all. I hope that he will further consider that question, including how experts, who still have so many doubts, can be consulted in more detail.
Given that we first started talking about these issues in this place before Christmas, and in order to expedite our deliberations, I hope that we will not have to wait until Report and that the amendments he mentioned will be brought forward as soon as possible. We understand that he has a wealth of civil servants and legal experts at his disposal; perhaps they can help him to act even quicker. My noble and learned friend has outlined that he is not prepared to accept any of the amendments proposed in this group, but we would like to see what he intends to propose as an alternative. I know that everyone is concerned that we should expedite our deliberations, in the light of the later groups, and that would help us all enormously.
I said “overpressed”, but I did not mean that; I meant to say pressed. I apologise for saying “overpressed”.
I will consult my lawyers with pleasure.
Lastly, all the amendments in this group address complex issues and, if they were passed, considerable further policy and drafting work would likely be required.
I thank the noble Baronesses, Lady Smith of Newnham and Lady Hayter of Kentish Town, for sharing their significant and painful experiences. I thank the noble Baroness, Lady Fox, for doing the same in relation to the last months of her mother’s life.
This group deals with the question of whether there should be special provision for people in care homes. Two routes are suggested: first, in the amendment from the noble Baroness, Lady Eaton, which was spoken to by the noble Baroness, Lady O’Loan, that there be a higher evidential standard; and, secondly, that a series of additional tests should be raised.
I think that everybody in the Chamber is agreed that care homes vary across the country; there are those of the highest possible standards and those that do not have the same high standards. It is also the case—a point made forcibly and effectively by the noble Baroness, Lady Watkins—that one should not confuse the fact that there are people in long-term care and people in high-tech nursing homes who are being rather elided here. People become institutionalised and may suffer long-term cognitive problems from being in care homes for a long time. The question raised is whether additional steps beyond those provided for in the Bill should be put in place to check that such people, particularly those who have been in care homes for the long term, have capacity.
The current arrangements require that the co-ordinating doctor is satisfied, after discussion with the patient and anybody else, that they have capacity, and similarly in relation to the independent doctor. Then, the panel has to be satisfied, and then the co-ordinating doctor has to witness the second declaration of the patient. The co-ordinating doctor can witness that second declaration only if he or she is satisfied that, among other things, the patient has capacity. Fifthly, the doctor providing the assistance also has to be satisfied that the patient has capacity. The question posed is whether, despite the fact that there are five separate occasions on which a doctor or a panel have to be satisfied of capacity, for somebody in a long-term care home, one should make additional provision for separate assessments or have a higher evidential standard.