Terminally Ill Adults (End of Life) Bill

Baroness Finlay of Llandaff Excerpts

Committee stage
Friday 6th February 2026 Lords Chamber

Debate on Amendment 71 resumed.

[Baroness Finlay of Llandaff (CB)]

My Lords, I believe that there may be some people who wish to speak before I come to my final remarks. I certainly want to hear from the Front Benches and the sponsor of the Bill. I will therefore withhold any remarks at the moment.

[Baroness O’Loan (CB)]

My Lords, I have added my name to Amendments 102 and 106 in this group. Clause 2 is of the utmost importance because the definition of “terminal illness” underpins everything in the Bill. Without a terminal illness, the Bill does not apply and there is no ability to seek assistance in suicide, so the definition is enormously important. Clarity is absolutely necessary and would be enhanced if a list of terminal illnesses were required to be published before the clause on the voluntary assisted dying commissioner could come into effect, as Amendments 85, 894 and 896 would require. Some conditions need to be excluded, such as being elderly, as in Amendment 99. Amendment 102 seeks to ensure that dementia is recognised as a disability and not in itself a terminal illness.

Amendment 105 would exclude anyone with a congenital, genetic or lifelong condition, for which treatments are improving rapidly. Life expectancy has increased dramatically in conditions such as cystic fibrosis, COPD, Parkinson’s and Duchenne muscular dystrophy. Pathfinders Neuromuscular Alliance says:

“Many individuals with progressive conditions, such as muscular dystrophy, live far beyond their initial life expectancy due to advances in medical care. Misjudgments in prognoses could lead to premature decisions, effectively ending lives that might have been enriched by appropriate care and support”.


This Bill does not provide protection for those with such conditions, who may be coerced into seeking an assisted death.

Amendment 106, in the name of the noble Lord, Lord Hunt, and the noble Baroness, Lady Grey-Thompson, to which I have added my name, would prevent assisted dying being offered where medical negligence, malpractice or omission has occurred and given rise to disability, impairment or a terminal condition until all investigations, compensation claims et cetera have been concluded. In many cases involving medical negligence, a failure to diagnose a condition which may have been treatable when the patient first presented is finally diagnosed as a cancer at stage 4 and has metastasised. This may happen, for example, when a young woman, sometimes even a child, has cancer of the cervix or uterus: some doctors do not think they could have such a problem, because they are too young. This will be profoundly difficult for the patients and their families, and it is vital that they do not lose benefits or part of the compensation they might have received by dying of assisted suicide, rather than a death which would have been recorded as having been caused by medical negligence. Those resources may be vital for a single parent with a young family. Does the noble and learned Lord accept the need for these amendments, or what is his alternative suggestion?

There are conditions which can be stabilised or controlled for years, and which, if not stabilised or controlled, may cause a doctor to predict death. Noble Lords have articulated the concerns that exist about the inadequacy and danger of this primary definition. Illnesses that can be stabilised, halted or effectively managed by treatment must be excluded, ensuring that only genuinely terminal illnesses are included in the definition.

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[Baroness O'Loan (CB)]

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.

[Baroness Finlay of Llandaff (CB)]

My Lords, after a very long and extensive debate, I thank all noble Lords who have contributed, particularly those who contributed with their own personal stories and descriptions of the way those experiences have affected people. However, I remind the Committee that we are legislating for the whole country, not for individual stories, and must look at eligibility carefully.

Frankly, the response from the noble and learned Lord is deeply disappointing. These amendments were tabled to make the boundaries of this Bill safer and to avoid opening the door to the wide creep that could happen. In terms of the six-month prognosis, there is an extensive body of evidence that there is no clinical truth in a six-month prognosis. I am delighted to be sitting next to my noble friend Lord Carter of Haslemere, who illustrates that beautifully, as does the noble Baroness, Lady Campbell of Surbiton, who was deemed to be terminally ill many decades ago.

I will try briefly to summarise. Frailty is not included, apparently, but geriatricians will say that frailty has a six-month prognosis, as does cancer. I would not want frailty included and am glad that it has been ruled out. However, people who are frail will also get other conditions. This group of amendments hit to the very issue of informed choice and patients making those choices. As was said, knowledge is power. The information that people need is that their diagnosis is accurate. They need information about the prognosis. It is very disappointing that the wealth of research evidence—systematic reviews, observation studies and so on—has shown that at six months the margin of error is huge.

My noble friend Lady Freeman is absolutely right regarding the way of communicating risk. You can say to people, “In 100 patients, so many are likely to be alive at six months”. The follow-up question that you will always get is, “Yes, but which group am I in?” That is the unknown. Their family will then push further—though not always—to know which group they are in. It is important in communicating information that we are honest and do not pretend that there is some clinical truth around “six months”. There is also, sadly, bias in the minds of doctors. I was concerned to hear from the Minister, if I heard it right, that a different six-month test would be applied by two different doctors—the co-ordinating doctor and the independent doctor—but I will go back to Hansard to look at that. The noble Lord, Lord Wolfson of Tredegar, pointed out the legal uncertainty around “reasonably be expected”. I caution that we should not ignore that.

It is disappointing that there is still a view that, somehow, six months is absolute, ignoring that there are patients who are expected to die not only in six months but possibly much sooner but who remain alive many years later. This is not about five months or seven months. This is about years—five years, 10 years, 15 years. I will not go into individual cases now, but I have a catalogue of them. The six months is not predictable. The attempt in these amendments was to make sure that the patient has better information on which to make probably the most difficult decision that they will ever make and the most irreversible—to end their life.

We have been trying to look at the problems in and improve the Bill. Rejection of all these amendments out of hand, without any invitation to look again at the wording or try to tighten it, is disappointing. With that, I beg leave to withdraw the amendment at this stage.

Amendment 71 withdrawn.

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[Baroness O’Loan (CB)]

My Lords, the issues raised in this group are extensive and a matter for great concern. Refusing food and hydration is a sure way to die, as, in many cases, is refusing treatment such as dialysis and insulin. Refusing food or treatment is a choice that a patient is entitled to make, if they have the capacity to make such a decision. However, that cannot translate into an obligation on the state to help the person to kill themselves. That was recognised, as the noble and learned Lord, Lord Falconer, said, by the Bill’s sponsor in the other place, hence the wording of Clause 2(2). However, the noble and learned Lord’s Amendment 87 would remove the safeguard offered by Clause 2(2), as it would prevent the Bill applying only where the person has a mental disorder and the act of refusing food or hydration causes them to have an illness or disease.

Many states start by offering assistance to die in very limited circumstances, but, only a short time afterwards, the grounds for the state helping people to kill themselves expand—in some cases, almost inconceivably. Do you have no wheelchair? We will help you die. Do you have no home? We will help you die. Are you suffering from PTSD after military service? We will help you die. In many jurisdictions, anorexia, which is a treatable illness, is accepted as justification for assisted suicide and so on. All the examples that I have just given—no wheelchair, no home and suffering PTSD—were grounds for assisted dying in Canada recently.

There are many suggestions for how to address the terrible vacuum through which all sorts of conditions that are not terminal could, as a consequence of refusing food, treatment or hydration, become terminal. I put my name to one such amendment, Amendment 101, in the name of the noble Baroness, Lady Parminter, and all the amendments in this group, other than Amendment 87, seek to address the issue. However, it is clear that the list of conditions and situations currently provided in Clause 2 as exceptions to the definition of terminal illness is not adequate. The noble and learned Lord, Lord Falconer, has even removed from the Bill the more general safeguard inserted by the MP for Batley and Spen. The noble and learned Lord will have to move far beyond his Amendments 87 and 87A if he is to satisfy the Committee that the definition of the situations that do not qualify as terminal illness is in any way satisfactory.

The prevalence of eating disorders goes way beyond what one might perhaps reasonably expect. NHS statistics for 2023 tell us that the prevalence of any eating disorder in the age group of 11 to 16 year-olds was 2.6%, but that in the case of girls it was 4.3%, compared with only 1% in the case of boys. If we move to the group of 17 to 19 year-olds, the figure is 12.5% in the whole group but, among girls, the number suffering from an eating disorder rises to 20.8%, compared with 5.1% among boys. Those are NHS figures. A review of current literature up to 2022 investigating suicide in eating disorders found that the prevalence of suicidal ideation was 51% and the prevalence of suicide attempts was 22%. I am very grateful to the young intern doing a PhD who provided me with these figures from the NHS. They demonstrate the magnitude of the problem of eating disorders today and, even more terribly, the 51% prevalence of suicidal ideation. Half of all people suffering from anorexia or other eating disorders will contemplate suicide, and more than one in five of those suffering from an eating disorder will attempt to take their own lives, although the disorder that they suffer from can be treated if they get proper treatment.

The Bill effectively creates a class of people—particularly disabled people, diabetics, those on dialysis, and others who need continuous life-sustaining treatment—who can at will cause themselves to have a terminal illness as defined by the Bill. Experts and the courts have agreed that refusing such treatment and creating a terminal illness out of a desire to die does not vitiate capacity. Can the noble and learned Lord, Lord Falconer, explain how creating a class of disabled people for whom voluntary suicide is legal and state-supported is consistent with the UK’s obligations under Articles 2 and 14 of the European convention?

[Baroness Finlay of Llandaff (CB)]

My Lords, I have in this group an amendment that was recommended by the Complex Life and Death Decisions group at King’s and which builds on the clause that was proposed in the other place by the MP for Bradford West and accepted, currently Clause 2(2). It seems that Amendment 87 before us would knock that out, but it has an amendment to it that has been clearly explained by the noble Baroness, Lady Keeley.

This seems to be the start of an improvement that is very necessary, but it does not do everything. There is a concern that those with other types of eating disorder can be missed out or slip through the net, particularly those with bulimia and those who go on completely bizarre diets and end up with severe malnutritional states. I have known two examples directly: one person believed that he could live only on cottage cheese, and another was eating kilogrammes of parsnips every day in the belief that that would cure her disease, and ended up with quite severe metabolic disturbances.

The problem with the amendments so far is that they fail to exclude the voluntary stopping of eating and drinking that is designed deliberately to make you terminally ill. I mention, if I may, the problem of T1DE—that is, a type I diabetic with an eating disorder. Lesley and Neal lost their young daughter Megan at Dignitas, after years of inadequate treatment. I have permission to quote them. They said:

“Following inadequate and inappropriate in-patient and community treatment for T1DE, our daughter chose to take her own life after asking for a Dignitas referral from her care team. She clearly would have taken up the assisted dying option if available to her, however, just before she committed suicide she said ‘I don’t really want to die, I just can’t do this any more’”.


That illustrates the real difficulty for young people with disorders that are on the boundary here. I hope that we can build on these amendments on Report to make sure that they really are watertight.

[Lord McCrea of Magherafelt and Cookstown (DUP)]

My Lords, I support Amendments 89, 91, 92, 101 and 103. Surely we need to demonstrate that what we term safeguards in the Bill against voluntarily becoming terminally ill are adequate and do not allow for voluntary acts to accelerate the timeline or even to create eligibility for assisted suicide. There seems to be a lack of clarity between terminal illness and eating disorders or voluntary action, which could undermine the very structure of the Bill itself.

Does the noble and learned Lord, Lord Falconer, in his Amendment 87, not row back on Kim Leadbeater’s previous amendment in the Commons? It seems that this amendment is significantly narrower. Can a suicidal person, dependent upon insulin or dialysis to remain alive, refuse that treatment and become eligible under the Bill? However, if he believes that cases of voluntarily withdrawing life-sustaining treatment such as insulin to voluntarily induce a terminal illness should not be eligible under the Bill, why does he oppose amendments that would close that loophole?

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[Baroness Hayman (CB)]

I understand that, and I understand that my mother would not have been considered to have committed suicide. What I am trying to say is that her desire for her life to end, and the method that she took to do that, was not assisted dying. That was not available to her and it did not come into the equation. On the categorisation of that as suicide, and this Bill is being called “assisted suicide”, I agree with the noble Baroness, Lady Fox, that we have to be clear. It is not that I am taking offence; I think that it is wrong to categorise people who wish their life to come to an end—and who therefore refuse treatment and food, or who choose assisted dying under the provisions of this Bill—as in some way committing suicide.

[Baroness Finlay of Llandaff (CB)]

My Lords, I wonder if I might briefly apologise to the Committee. I was reading a quote—they were not my words. The quote was about a young woman who was said to have committed suicide. If we are going to be respectful of everyone, we must drop the word “commit”. It is not a crime to end your own life. I know that, for the relatives of those who have taken their own lives by suicide, the term “commit” can be deeply offensive. But as many people in this Committee will know, when you have experienced the suicide of someone very close to you, it lives on, in the way that a death also lives on in the person left behind. But I apologise, because it was a quote I was reading, and I think we should return to the topic of the amendments before us, if we may.

[Baroness Berger (Lab)]

My Lords, I am going to do as the noble Baroness, Lady Finlay, has requested and carry on with the group of amendments before us. To echo the sentiment just expressed about the language we use in this place—and it does matter—there are Members on all sides who have used the term “commit suicide”. Suicide is no longer a crime or a sin and, on that basis, for people affected by suicide and those left behind, it is a good reminder that we should all endeavour wherever possible, as the media tries to do outside this place, not to use that terminology.

In reference to one of the points just made by the noble Baroness, Lady Gerada, we will come back to these issues in some later amendments. Complicated grief can arise from an assisted death, and I shall propose some amendments to address that and to think about the people who are left behind. We certainly have evidence of that in other jurisdictions. We also know that adverse complications can arise from the drugs people ingest through an assisted death, which can have far-reaching consequences for the people left behind. We will debate that later.

As a signatory to Amendment 87A, I welcome the fact that these important changes will be accepted, along with Amendment 87. However, I want to add some additional information. It is important to acknowledge that these amendments do not address all the gaps connected to eating disorders. There is no protection for people whose eating disorders may bring them within scope of the Bill’s definition of terminal illness in other ways. That includes refusing treatment rather than food, which is addressed in Amendment 92, which I do not believe the sponsor would accept at the moment, or a person with bulimia sustaining damage to their organs through vomiting.

Why does this matter? We have talked about anorexia, which is a fatal disease and one of the mental health conditions that leads to the greatest loss of life through mental illness. However, it represents only a minority of eating disorder cases in the UK. A large population study published in 2017 found that anorexia accounted for just 8% of eating disorder cases. We know that bulimia is far more common, but it can also be fatal, with well-established risks including sudden cardiac death, severe electrolyte disturbance and rupture of the oesophagus. The amendment rightly focuses on anorexia but, as someone who is a signatory to Amendment 87A, I acknowledge that we must do everything to provide protection to all people with eating disorders in this country, including bulimia.

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[Lord Falconer of Thoroton (Lab)]

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.

[Baroness Finlay of Llandaff (CB)]

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.

[Lord Falconer of Thoroton (Lab)]

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.

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[Viscount Colville of Culross (CB)]

My Lords, I apologise: this is the first time I have spoken on the Bill. I have added my name to Amendment 115 in the name of my noble friend Lady Finlay. My concern is that, as other noble Lords have told the Committee, the Mental Capacity Act has the presumption that, if in doubt, the doctors making the assessment of the patient’s mental capacity have to assume that they have the capacity unless proved otherwise.

As other noble Lords have also said, if the patient is deciding whether to go into a residential home or what to do about their financial affairs, that is fine. But I am convinced that a terminally ill patient should have to prove that they have the mental capacity to make the gravest decision possible: that of ending their own life. I would like their doctors to have to decide that the patient has the mental capacity to make such a huge decision. Amendment 115 sets out a list of tests to help the doctor come to that conclusion.

To find out the importance of the changes to the Bill put forward in Amendment 115, noble Lords have only to look at jurisdictions where the default position is the presumption of mental capacity. Canada has already been raised by the noble Baroness, Lady Berger, with very good reason. In some provinces, such as Quebec, 8% of all deaths are by assisted dying, and on Vancouver Island, which has lamentable palliative care, the percentage rises to 11%. These, in my view, are big numbers.

I am concerned by the Canadian definition of mental capacity, which, as with our own Mental Capacity Act, emphasises that every person is presumed to have mental capacity unless proved otherwise. In the early stages of dementia, this can lead to cases of people being assumed to have mental capacity for assisted dying, or MAID as it is called in Canada, even when they are confused about the implications of the decision.

I have spoken to a number of Canadian doctors and psychiatrists, who gave me worrying examples of this happening. One doctor told me they had a male patient in his mid-70s with prostate cancer who had been diagnosed with mild dementia. He was admitted to hospital for worsening confusion. Medical investigations were undertaken to determine whether this was delirium on top of the dementia or worsening dementia. During the admission, and before the cause of the worsening condition had been determined, he stated that he wanted to be left alone and that he wanted to die, so the MAID team were called.

The MAID team deemed him eligible for the process, but then the palliative care team were also called. The doctor I spoke to was the patient’s consultant on this team. She interviewed the patient and he told her that he wanted hospice care and palliative treatment. She concluded that he could not differentiate between being sent to a hospice for palliative care and having a lethal injection to immediately end his life. But the MAID team still assumed that he had the mental capacity to go ahead with his first decision to have assisted dying. When they asked him subsequently whether he wanted medication to help him to die, he agreed to it. MAID was carried out shortly afterwards.

I would like the Bill to ensure that there is no confusion about whether such terminally ill patients have the capacity needed for this huge decision. I suggest that Amendment 115’s proposed subsections (1) and (2), which would reverse the presumption of mental capacity, would prove a much better safeguard.

I also draw your Lordships’ attention to whether having a doctor raising the option of assisted dying to a terminally ill patient is regarded as treatment, a matter on which the Minister in the other place said the Government were silent. Proposed subsection (6)(g) of Amendment 115 states that

“the self-administration of such a substance is not a medical treatment for their terminal illness but a personal choice concerning life and death”.

I know that amendments to Clause 5, if accepted, would have the same effect, but I argue that it would be a belt and braces to have the concept that the doctor cannot, unprompted, raise the option of assisted dying in the mental capacity clause of the Bill. It is important that the request for assisted dying is initiated by the patient and is not seen as a treatment initiated by the medical team.

Once again, I turn to the experience in Canada, where doctors and healthcare professionals are duty-bound to raise assisted dying as an option for any patient admitted to hospital who suffers from a condition that makes them eligible for MAID. I spoke to the doctor of a Canadian patient who was found to be eligible for MAID and went into hospital. Each medical professional who visited him offered the option of MAID, alongside the option of drugs to alleviate his condition. This meant that on the day of going into hospital, he was offered MAID six times by six different medical professionals. Each medic was aware that if they did not offer the option, because MAID is classed as a medical treatment, they would be sued for negligence. I fear this will put unnecessary pressure on patients.

Obviously, the eligibility for MAID in Canada is very different from that proposed in the Bill, but Canada is still an important lesson for us. In this country, it is imperative that it is left up to the eligible patient to initiate the request for assisted dying. The amendment would ensure that doctors are not forced to initiate the request, which would avoid the patient feeling any pressure to end their own life. I hope that the amendment will be accepted. It would provide safety rails for patients eligible for assisted dying.

[Baroness Finlay of Llandaff (CB)]

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.

[Lord Falconer of Thoroton (Lab)]

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.

[Baroness Finlay of Llandaff (CB)]

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.

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[Lord Markham (Con)]

If I may say—I hope, like my noble friend, in the spirit of helpfulness—this has been a thoughtful debate, and we all want the best decision-making framework for these decisions. I am definitely not going to pretend that I have personal expertise as to what the best decision-making framework is. However, on some of the earlier comments, Professor Chris Whitty is our Chief Medical Officer and, although he might not be an expert in psychiatry, he draws on the expertise of the many experts in that field. A number of psychiatrists wrote in to MPs and Lords as part of this process, saying that they felt the Mental Capacity Act was a good, tried and tested framework to be used on this basis, and that there are certain dangers in trying to introduce an as yet new and unknown framework.

There is also the possibility of confusing situations. There could be three patients: one with a do not resuscitate order, another with motor neurone disease and the question of whether their ventilator should be switched off, and a third being assessed under assisted dying. These are quite similar circumstances. If you were to have two different frameworks for assessing them then there is the possibility of quite a lot of confusion as to the best way to do that. I say this to ensure we are looking at all the pros and cons. I am not going to pretend at all to be an expert on this, but the Mental Capacity Act has been tried and tested for a number of years, and there are a number of expert psychiatrists who think it is absolutely the right framework in which to do this.

[Baroness Finlay of Llandaff (CB)]

I wonder whether the noble Lord, in reading the Mental Capacity Act and Amendment 115, has recognised that the wording in Amendment 115 is deliberately taken from the Mental Capacity Act in order not to create confusion and the difficult situation he is alluding to, which could have happened if somebody was trying to construct an assessment framework out of the blue.

[Lord Markham (Con)]

Where that clarity can exist then that clearly must be the right thing, but my understanding of the many amendments that have been tabled is that a lot of them seek to replace the Mental Capacity Act with a new decision-making process, which, inevitably, is not tried and tested and so could be confusing. I reiterate that I am not an expert in this—

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[Lord Falconer of Thoroton (Lab)]

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.

[Baroness Finlay of Llandaff (CB)]

My Lords—

[Lord Falconer of Thoroton (Lab)]

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.

[Baroness Finlay of Llandaff (CB)]

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—

[Lord Falconer of Thoroton (Lab)]

My Lords—

[Baroness Finlay of Llandaff (CB)]

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.

[Lord Falconer of Thoroton (Lab)]

My Lords—

[Baroness Finlay of Llandaff (CB)]

All right, I will stop there and come back in afterwards.

[Lord Falconer of Thoroton (Lab)]

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.

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[Lord Falconer of Thoroton (Lab)]

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.

[Baroness Finlay of Llandaff (CB)]

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.

[Lord Falconer of Thoroton (Lab)]

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.

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[Baroness Finlay of Llandaff (CB)]

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?

[Lord Falconer of Thoroton (Lab)]

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.

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[Lord Carlile of Berriew (CB)]

I am grateful to my noble friend for that intervention. She has raised three points, and I want to answer all three quickly. On point one, I absolutely agree with her: we have to respect the views of staff, particularly views that are a combination of professional and philosophical principles. Taking this process out of the nursing home, in accordance with Amendments 110 and 112, does exactly that.

Secondly, advance directives are quite an esoteric issue. I echo what the noble Lord, Lord Deben, said, based on his experience as a Member of another place. There are a number of us here who used to go to nursing homes and residential homes at least twice a year, sometimes taking our children with us to add good cheer. We came out with very different impressions of those homes: the good, the indifferent and, in one or two cases, the really bad. We have to take that into account. In some of those homes, there is practically nobody with an advance directive. Advance directives on the whole are a middle-class thing. Probably most of us here have advance directives of some kind or another, which one has to pay one’s solicitor to produce; one has to pay a lot of money in London, happily rather less out in the provinces. Where there are advance directives, that is fine, but not everybody has them.

I have spoken to the third point, which related to the remarks of the noble Lord, Lord Deben. I repeat that I am making an extremely practical point that ought to be addressed. If this responsibility lies with nursing homes, then it will cause immense difficulty. Also, there is always the risk in the really bad residential and nursing homes that people will be subject to undue influence in the unusual atmospheres of such institutions.

[Baroness Finlay of Llandaff (CB)]

My Lords, I would like to provide some information to the Committee which I think supports these amendments quite well. Care England, which has 122 care providers, consulted its care providers some weeks ago. It found that:

“84% have not been consulted on the Bill or its implications. 24% said staffing would become very difficult due to conscientious objections, with a further 16% expressing similar concerns. Only 14% reported staff being willing to participate in the whole procedure … Only 13% said they could manage assisted dying in their Homes. Only 27% reported 24/7 access to specialist palliative care support on site”.


This demonstrates that the care home sector itself has been very worried about how it would cope with this. Sadly, it also demonstrates just why not having specialist palliative care in scope on this Bill has created quite so many problems.

[Baroness Lawlor (Con)]

My Lords, I will speak in support of Amendment 111 in the name of my noble friend Lady Eaton. This would require a higher bar for proving capacity in care homes and nursing homes. The noble Baroness, Lady O’Loan, has already referred to the data: the evidence of higher cognitive impairment in 70% of care homes, the failure of MCA assessments in 15% to 25% of them, and the incidence of dementia. I will not recount the other data; I have cut it out of my speech.

There is also the very mixed picture we get of care homes and nursing homes. One example was a recent—well, not that recent—undercover BBC programme about Whorlton Hall in County Durham, a hospital for patients with learning disabilities and autism. The evidence was shocking. It was described by specialists in the subject as amounting to psychological torture.

Apart from the problems that we have in care homes with giving patients the ability to use capacity because of all the counterfactuals that exist and the impossibility of accurately establishing capacity, I reflect on the potential harm resulting from another factor, a danger we should bear in mind—that from the state. Officials bureaucratise a system in a way that endangers the frail and the elderly and, under this Bill, particularly endangers care home residents, some of whom have been misdiagnosed as having capacity when they do not, and go on a path to suicide. We have already heard mention of the Liverpool care pathway in that connection.