(5 months, 4 weeks ago)
Lords ChamberMy 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.
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.
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, 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.
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?
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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—
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.
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.
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.
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.
(5 months, 4 weeks ago)
Lords ChamberMy Lords, I declare my recent observer role with the Medical Schools Council, and as a pro-chancellor at Cardiff University, which, of course, has a medical school. The Bill aims to address a problem that has been brewing for years—but some medical graduates will unintentionally suffer, and we must consider them.
Specific groups have already been mentioned by the noble Earl, Lord Howe, and the noble Lord, Lord Clement-Jones, but they warrant reiterating. First, there are medical graduates from established overseas branch campuses of UK universities. That is not only Malta; Newcastle has already been spoken of, and there are others. There are also UK citizens studying medicine in the EU in good faith, always intending to work in the NHS, and international graduates unable to receive specialist training in their own country, who come here before returning to develop key specialist services in their home country. There are also those who relied on the published recruitment framework in good faith for years, and made irreversible decisions—relocating families, investing time and money, filling rota gaps and sustaining NHS services through Covid—never expecting specialty training to be rewritten while applications were already in progress. Would a separate tier, after the current priorities but ahead of those with no UK connection, provide a solution?
As has been said, a few UK medical schools deliver their degrees from established branch campuses abroad, by fully accredited programmes regulated by the General Medical Council. They follow the UK curriculum, and are taught and assessed in English to identical academic and clinical standards. These students graduate with a UK medical degree and will have passed the UK medical licensing assessment. They often apply to work in the NHS and transition smoothly into clinical practice, benefiting the NHS. These graduates have applied for UK training posts under one set of rules, but face different rules with limited options. Should these UK medical graduates not be prioritised over graduates from non-UK universities across the world?
There is a wider significance, as has already been alluded to. The Government’s international education strategy states the importance of universities seeking global opportunities, such as developing branch campuses. To avoid opening the floodgates, do the Government envisage capping UK healthcare degrees delivered offshore? This year, there were over 25,500 UK applicants for just over 10,000 UK medical school places. Selection at 18 years old is difficult. Each year, having invested in years of their schooling, we reject highly capable home applicants who would be excellent doctors. Many of them choose to study abroad, determined to return to work in the NHS. Should they be required to pass the UK medical licensing assessment, so that UK citizens studying in the EU after school are not left stranded?
For postgraduate trainees who applied through the previous recruitment framework and are currently working in the NHS, with several years’ experience, would recognising service from Covid onwards be considered in the eligibility in the current round? Where is the expansion of specialty training posts and academic posts for some of these graduates?
Lastly, all UK health expertise benefits international development. Many countries lack their own training expertise, and historically the UK has trained specialists to go back to develop services in their home countries. This altruism improves global health and creates opportunities for the NHS, universities and pharmaceutical and tech companies to gain international contracts. Without routes for overseas doctors to train here, our international partners will look elsewhere.
The Bill apparently aims to secure a reliable supply of doctors for the future, ensuring that those with a UK medical link are more likely to progress to current consultant roles and continue their careers in the NHS. Will international medical student places here be further limited? Otherwise, the Bill could mean that UK students forced to train overseas through limited home student places will not be prioritised, whereas international medical students at UK medical schools will. In passing the Bill with speed, we must avoid penalising our own graduates, jeopardising international partnerships, or appearing hostile to international excellence or unreliable by suddenly changing the rules. Will the Minister consider widening the priority group or adding other tiers to recognise the importance of medical graduates?
(6 months ago)
Lords ChamberMy Lords, I will speak on face-to-face consultation; my Amendment 483 on this is in a later group.
During the Covid-19 pandemic, it was briefly made possible for the making of a will to be witnessed by videolink rather than in person. This change could have been made permanent, but instead the Government decided that the videolink provision should cease from January 2024. The law is now again that the witness must have a clear line of sight of the person making the will. Are these precautions any less important when assessing whether someone truly wants an assisted death and is not being coerced than when establishing what should happen to their assets afterwards?
My Lords, the noble Baroness, Lady Keeley, has already alluded to the issue of wills, so I will not go to that, but there is another legal precedent, Devon Partnership NHS Trust v the Secretary of State for Health and Social Care in 2021, when the High Court ruled that under the Mental Health Act, the phrases “personally seen” and “personally examined” require the clinician and approved mental health professional to be physically present with the patient for detention assessments. Following that, NHS England reviewed its guidance. That underscores the legal and clinical importance of physical co-present evaluation when decisions carry high consequence.
Secondly, during Covid I chaired the National Mental Capacity Forum and ran fast-track online seminars for those who were doing remote assessments because of the problem of people in care homes. It was a very difficult time and that was a public health necessity. Since then, some remote consultations have certainly continued, as we have already heard. However, the qualitative studies of remote mental health care during the pandemic found that a lack of face-to-face contact compromised risk assessment and therapeutic insight.
Systemic reviews have noted significant difficulty establishing a therapeutic relationship, identifying risk, and with challenges in picking up non-verbal communication and building rapport coming through as recurrent themes. They caution how remote assessments can be less effective in capturing complex, subtle behaviours, non-verbal distress, agitation and contextual pressures, which are crucial in determining voluntariness and in detecting distress or coercion. Clinicians and carers have reported that non-verbal cues were often unavailable or obscured in remote interactions, particularly telephone consultations but also by video. Even when remote assessments were used only to triage risk, delaying face-to-face evaluation, the effects slowed down accurate identification of deteriorating conditions.
My Lords, in the previous debate we had an interesting discussion about the importance of face to face. I think the conclusion was that the noble and learned Lord, Lord Falconer, should bring forward amendments that would make face to face the default mechanism, while accepting that there would be exceptions. At that point, I raised the question of recorded statements made by someone who then could not speak. It is important to remember that speech can now be faked and can sound exactly like the person. I hope that, in drawing up those amendments, the noble and learned Lord will be able to encompass some protection to ensure that, when a presentation is made of a recording that seems to be in somebody’s voice and in their words, we are still protecting against abuse and coercion and against those with malintent who may have faked that. Unfortunately, we are already hearing stories of criminal activity where such fake voice recordings are used, and we find that people believe them as being from the person, when actually they have been part of a criminal activity. This amendment has been important—although I accept, of course, that it is only a probing amendment—because it has actually made us think on a much wider scale.
My Lords, the Government’s 10-year health plan for England seeks to
“make the NHS the most AI-enabled health system in the world”.
Like others, I think that is an incredibly exciting prospect. I do not want it to be dystopian. I think that the right reverend Prelate the Bishop of Hereford makes an important point in warning us against going completely over the top. I think it is important that this amendment has been tabled, because it makes us think about what the possible problems are, which have been well expressed by others. Despite my excitement about what AI might do, even in terms of treatments—there are wonderful possibilities in terms of helping people to walk, what is happening with the brain, and so on—we do not want to be naive.
The question for the noble and learned Lord, Lord Falconer, is: as the NHS digitises and doctors become increasingly reliant on AI for notes and diagnostics, given that the diagnosis is so important in a life-or-death situation in this instance, how can we ensure that a time-poor doctor does not use AI as an assessment tool or a shortcut? We would be naive to imagine that that does not happen elsewhere; we would only have to think of politics. People now use AI to avoid doing research, in a wide range of instances, and I do not want that to be translated over.
As for the patients, algorithms are supremely impressive and can take things that have happened on Facebook or TikTok, from when you have been on a Teams meeting or Zoom—all sorts of indications—and detect chronic illness conversations. The algorithms can then push pro-assisted dying content such as the Switzerland adverts or positive end-of-life options. Interestingly, when discussing banning social media for under-16s, which I completely disapprove of, or bringing in the Online Safety Act, which I argued against, everybody kept saying, “Algorithms, oh my goodness, they can do all these things”. We should consider not that chatbots are malevolent but that AI tends to agree with people via the algorithms; to quote the title of a piece in Psychology Today, “When Everyone Has a Yes-Man in Their Pocket”. If you say that you are interested in something, they will just say, “Yes, here are your options”. That is something to be concerned about, and it will come up when we discuss advertising.
I finish with that BBC story from August of a Californian couple suing OpenAI over the death of their teenage son. They allege that ChatGPT encouraged him to take his own life, and they have produced the chat logs between Adam, who died last April, and ChatGPT that show him explaining his suicidal thoughts. They argue that the programme validated his most harmful and self-destructive thoughts. I am just saying that AI is a wonderful, man-made solution to many problems, but if we pass a Bill such as this without considering the potential negative possible outcomes, we would be being irresponsible.
My Lords, this has been a very interesting debate. Many Members perhaps do not appreciate the extent of the potential, and the length of time over which that potential could remain open.
When I was Minister for Enterprise in Belfast and represented Belfast East as an elected Member, that area had vast numbers of people suffering from asbestosis, mesothelioma, pleural plaques and so on, because it was an industrial area. We had shipbuilding, aircraft-building and electrical work, and asbestos was involved in wiring. The workforce used to play snowballs with it; that was the extent of it.
What emerged—and this is the important point, as I am sure the noble and learned Lord, Lord Falconer, will understand—is that first, a lot of companies, such as Turner & Newell, a very famous company, had gone out of business and, in some cases, their insurers had gone with them because of the extent of the claims. What people need to understand, and the reason why the Northern Ireland Government got involved, is that, in some cases, the state had owned those companies at one point, so the state was the employer. Therefore, there was a direct line of liability between the client, the company and, ultimately, the state. Now, the state has owned a number of businesses on and off over the years, all over the UK. This is not confined to asbestosis or related diseases; as the noble Lord, Lord Harper, mentioned, there is the whole question of the Armed Forces, for example.
To give a sense of the spread of all this, it can take up to 30 years before a disease such as asbestosis becomes obvious, and for mesothelioma and many of these diseases, there is no cure; it is very brutal, and it can be very quick. It emerged that, when workers came home, their clothing passed the asbestos on to their spouses and children. I remember many years ago setting money aside, up to 2050, to cover potential claims arising from the state having owned parts of some companies over the years. So in the absence of any insurer or employer, the state ended up in that position.
These amendments have opened up a whole new frontier that we have to get sorted out. The risk, obviously, is that those dependants will therefore have absolutely no recompense: not only will their relative have died a pretty brutal death—as the noble Lord, Lord Hendy, knows from his experience—but they will be left destitute. This needs sorting out.
I am most grateful to the noble Lord, Lord Hendy, with whom I have had conversations going back to last September. I have looked after many patients dying of mesothelioma, and it seemed to be a loophole if the chain of causation was not completely intact.
We had advice in several calls from extremely wise sources—I will not list them all—and I learned a great deal about the legal side and the Fatal Accidents Act. I have some questions for the noble and learned Lord, whom I met with yesterday. He assured me that he would be bringing forward amendments, but unfortunately, I did not see them at the time; it was only much later that they appeared in my inbox. I have not been able to go through them in detail to examine the precise wording.
The concern is that unless this is watertight, these companies will wriggle out of any type of compensation. Therefore, what is the position of coronial oversight in these cases, where perhaps even the diagnosis might be questioned by a company, and it could be difficult for a family to provide the evidence it might be demanding? One does not know. Also, what is the position regarding the life insurance policy of the individual when they have an industrial disease and there is a chain of causation? They might be eligible, one hopes, for compensation. That needs to be followed through. However, somebody could claim that in some way, the chain of causation had been broken.
My Lords, I express my appreciation to the noble Lords, Lord Hendy and Lord Harper, for bringing these matters to our attention. I had prepared a speech describing the awful situation of mesothelioma, et cetera. I will not talk about that but will just say a couple of other things.
This has clearly identified a huge gap in provision in this legislation: a Bill is being passed that may have consequences it does not provide for in any way. I am thinking in particular of the Fatal Accidents Act: people are dying of these industrial diseases, including military victims. I had no idea that military victims would lose compensation in that situation. I am very grateful to them for identifying such a significant gap. This is very important for members of the Armed Forces, because many of them suffer from mental illnesses as a consequence of their service, in addition to any other condition from which they may suffer. That always makes life harder for them in trying to negotiate their way through and make decisions of such a profound kind. The noble Baroness, Lady Finlay, mentioned the problem with insurance policies and suicides. Most insurance companies will pay out after a suicide, provided that the minimum time has elapsed since taking out the policy. If someone has an assisted suicide, we do not quite know how that will affect their insurance policy; but it now appears that if the underlying cause of death—the terminal illness which led to the granting of assisted suicide—is something such as cancer, that may send the insurer straight back to find out what underlying habits were disclosed, such as the person being a smoker. It all becomes enormously complicated for the person suffering from a terminal illness who is trying to decide whether to seek an assisted death. There is no provision in this legislation for consequences for their families in situations such as this.
I completely agree with that analysis, but it does not mean that if you have mesothelioma you are not suffering from a progressive illness or disease. That is different from somebody who is injured and has an injury that cannot be cured and was plainly caused by, for example, a car accident. I am grateful to the noble Lord, Lord Sandhurst, for making that point, because I was going to say that, when we are talking about, for example, an illness caused by smoking or a disease caused by industrial waste, that does not make it any the less an illness or disease. The Bill is not interested in how you got lung cancer or bowel cancer; it is interested only in whether you have an illness or disease.
The second point is of considerable importance—the question of the Fatal Accidents Act. I do not think that anybody in the Committee wants somebody who has, for example, mesothelioma to be deprived of any claim that they may have against somebody who has committed a tort in giving them mesothelioma. They should not lose that right as a result of taking an assisted death. My noble friend Lord Hendy made the important point that somebody who might want an assisted death should not be deterred from it because they worry that that might affect it. For me and for the Bill’s sponsor in the other place, the only question is: what is the best way to deal with that? One of the possible answers is to have a considered review that will report before the Act comes into force. There is a little difference between what I am saying now and what the noble Lord said. I have absolutely no desire to test this by a few court decisions early on. We have to resolve this before that happens.
That is why my Amendment 786A requires the Secretary of State to produce a report about the effects of the Fatal Accidents Act within “the first reporting period”—that means within 12 months of the Bill being passed—which is more than two years before it would come into effect. Plainly, the intention is that the report be given and then whatever necessary steps there are that have to be taken to deal with the position in tort can then be taken, if necessary, by primary legislation.
I think what the noble Baroness, Lady Finlay, meant in her speech was, “That is not good enough. You need to deal with the Fatal Accidents Act now, in the Bill.” There was no real sense one way or the other. Obviously, I will consider what she and others have said. If an amendment were tabled on Report saying that this had to be dealt with then and there—by which I mean a provision that said words to the effect of, “You do not lose your rights under the Fatal Accidents Act because you have an assisted death if you otherwise had them immediately before the assisted death”—it would be for the House to decide in relation to it.
The reason why I am advancing a review approach rather than nailing it down in the way proposed by the noble Baroness, Lady Finlay, is that it gives every single angle the opportunity to be looked at. But it would be for the House to decide which was the better way of dealing with it. There is no doubt that, one way or another, the point needs to be dealt with.
Three other points were raised. First, what about the statutory mesothelioma scheme, which makes provision for the payment of compensation? It is dealt with by regulations. We would need to look—actually I cannot look at them, but the Government would need to—at the regulations. I anticipate that there would be no real issue for the Government in making sure that an assisted death was not prejudicial to someone under that.
Secondly, on statutory compensation—I may have misunderstood the question but the noble Lord, Lord Harper, will help me with this if I have—statutory compensation for the military might have been what he had in mind, under the various statutory compensation schemes. Again, they are in the hands of the Government and we need to see what those statutory compensation schemes say.
The final point, made by the noble Baroness, Lady Finlay, was about insurance policies. As she will know, they depend entirely on the terms of the insurance policy and it is difficult to deal with the terms of an insurance policy in an Act of Parliament. However, I am grateful to everyone who contributed to this debate.
Before the noble and learned Lord sits down and we end this, I have a real concern. If we are going to have a review from when the law is implemented, and it reports and decides what needs to be done, what is going to happen during that period to the victims, who may find that the argument that the chain of causation has been broken is picked up by insurance companies in an industry that is desperate not to pay out? As we have heard, the Government themselves have an interest in not having to pay out because of the size of the compensation for which people are rightly due because their lives have been not only ruined but taken away.
To go back to the point about injury, one of the long-term dangers of a catastrophic injury is renal failure. What if someone in that position decides that they do not want to continue with dialysis? That would then put them in the category of being terminally ill. I am also concerned that the building site, or wherever it was where they were working, that caused the catastrophic injury could then claim that the chain of causation had been broken in this situation and therefore wriggle out of compensation that would otherwise be due.
On the first point, as I said, the review has to report in the first reporting period required under Clause 50. That means that it reports probably three years before the Bill comes into force, so there will be no cases. It is not doing what the noble Lord, Lord Sandhurst, was saying. On the second point about wriggling out, what the noble Baroness was describing would also be a Fatal Accidents Act case, so it would be covered, one hopes, by what the review deals with.
My Lords, this group concerns terminal illness. It is incredibly important. It is the title of the Bill, so it is extremely important that we have proper definitions of terminal illness in the Bill that are beyond doubt. The proposal to make eligibility dependent on a clinician’s judgment that a person is expected to die within six months might appear to be a safeguard, but evidence from palliative care, primary care and prognostic research shows that predictions are highly unreliable and largely guesswork. Some national celebrities who clamoured for eligibility live for years, while others campaigning for this Bill for themselves are clearly ineligible. Do doctors need to be 95% confident or 50% confident to rule that the patient will die within six months to be eligible? No validated clinical tools or tests exist to make such determinations with sufficient reliability for life-ending decisions. This lack of reliable knowledge leaves clinicians to face pressure to make prognoses they cannot substantiate with concurrent legal risks and ethical dilemmas.
Medical science recognises broad trajectories of decline. Those dying of cancer often experience a relatively long stable period followed by rapid deterioration over weeks or months. People with advanced organ failure, such as heart or lung disease, tend to decline in an unpredictable, fluctuating pattern marked by crises and partial recoveries. Others, particularly those with multiple conditions, neurological illness or frailty, experience a slow, progressive dwindling over years with an average of 20 or more months from identification of early palliative care needs to death and, during that time, quite marked fluctuations.
While these patterns help clinicians anticipate needs for care, they do not forecast how long an individual has left to live. A six-month prognosis is not a clinical truth. Medical prognostication for terminal illnesses is based on averages. However, in the individual, marked variables influence survival, including treatment response, infections and physiological resilience. A time-based legal threshold would turn population-level averages into high-stakes individual errors, approving some who are not within six months and denying others who are. An assisted death is irreversible, amplifying the consequences of prognostic errors and litigation. A systematic review of 42 studies on clinicians’ predictions for terminal cancer patients found very low accuracy rates ranging from 23% upwards. In a multicentre study of more than 2,000 palliative care patients with advanced cancer, physicians’ clinical predictions were accurate in only 35% of cases. Tools such as the surprise question—Would you be surprised if this patient is alive in a certain number of months or weeks?—have been tried as a way to predict those likely to die. It performs poorly at six to 12-month predictions, especially for people who have multiple conditions.
The six-month rule is unsafe and unworkable. Assisted dying legislation requires criteria that are objective, transparent and as evidence-based as possible. The definition must exclude conditions that can be meaningfully stabilised or controlled for years, as in Amendment 104 in the name of my noble friend Lady Grey-Thompson. Manageable conditions must not be treated as terminal if somebody during an episode of depression or other life trauma, such as bereavement or a relationship break-up, decides to stop whatever treatment they have when they are feeling suicidal, such as the diabetic who decides to stop their insulin knowing that if they do, they will die within weeks.
The arbitrary time of six months is unverifiable. You have a less than 50% chance of being right, and the index of suspicion, as written in the Bill, is far too low. A review paper by Scott Murray and Simon Etkind, published in the British Medical Journal in March 2025, described how inaccurate prognostic tools are—as well as the importance of illness trajectories, which can
“provide broad timeframes and patterns of likely decline”
to help doctors understand disease progress.
Patients with frailty have been described as being “on a tightrope”: some will stay on for years, but others may suddenly be blown off by an infection or a fall, and die rapidly. The Bill says nothing about pain, suffering or potential suffering. The only disease-related issue in it is prognosis, yet accuracy at six months below 50% is a pure guess that someone has six months to live. To tackle these problems, Amendments 71, 77 and 90 offer options to look at the progress of disease to increase the chance of being a little more accurate at six months, which is the point at which you could trigger the process of applying for an assisted death.
Amendment 79 would help clarify whether the disease is progressing because some potential disease-modifying treatments have been ignored—or, perhaps, the patient does not even know about such treatments. The progress of the illness will give a far better indication of whether you are rapidly deteriorating or are, in fact, remarkably stable.
My Amendment 444A would allow you to be monitored while you have other support, having triggered a request for an assisted death. This would allow specialist palliative care to be available to you if you wish to try out various suggestions. Then, as the disease is progressing more obviously towards death and there is a greater sense of predictability, the person would be eligible for sign-off by the panel and given the lethal drugs. The best evidence on predictability would be the point at which the palliative prognostic index score indicates that the person has a more than 50% chance of dying within six weeks.
However, Amendment 444A offers a compromise, because I am sure that many people will feel that six weeks is too short a timeframe. It suggests that the patient cannot have lethal drugs until they really are seen to be terminally ill and the clinicians are more confident in predicting that death is likely to occur within three months. The patient who is rapidly declining would not need to wait between first assessment and having an assisted death because they would be seen to be declining rapidly, but the patient who is completely stable would not risk having the lethal drugs until there was evidence that they were actually in the last phase of their terminal illness and a wrongful death could be avoided.
Some jurisdictions include frailty in their definition of “terminal illness”, but others do not. Evidence on this came up in Committee in the other place: a 2025 paper in Age and Ageing titled, “Why We Need to Consider Frailty in the Assisted Dying Debate”. With this extensive uncertainty around frailty and other multimorbid conditions, does the noble and learned Lord, Lord Falconer, include frailty in his definition of “terminal illness” or not? Also, does he accept that disease progress is critical to avoiding wrongful deaths? I beg to move.
My Lords, the noble Baroness, Lady Campbell of Surbiton, is taking part remotely. I invite the noble Baroness to speak.
(6 months, 2 weeks ago)
Lords ChamberMy Lords, I am sure that, not only in this House but across the country, people are grateful to Scott Arthur MP and the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this incredibly important Bill.
I declare that my working life has been in palliative care. I have looked after many children and adults with rare cancers, including some very close to me and some in my family. They often seem to have missed out on the research agendas at an early stage, yet they all are incredibly generous, saying that they know a study may not help them but it will help others.
In the 1970s I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia. The prognosis was appalling but, because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured— which is very novel and complex—as brutal, but he knew that without the research of previous years, he would not be alive and well today.
Ocular melanoma illustrates why the Bill is so urgently needed. These patients are very often young, and the primary treatment is to try to cure the malignancy, but that is not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and have an effect only in a small genetic subgroup, extending life expectancy by under six months. Some 60% of patients with metastatic uveal melanoma have no approved treatments available to them that are specific to their disease. They rely on other drugs developed for skin cancer, a completely different disease, which have limited if any benefit.
For 25 years, novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemosaturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groin, while filtering blood to protect the rest of the body. The liver deposits shrink, some dramatically, with an overall 84% clinical benefit rate with improved quality-of-life markers. Two UK centres, Southampton and Manchester, undertake this and are researching it. Survival improvement is, on average, over 20 months, which means that it is funded in the USA, Germany and several other European countries—but it is not funded here. Patients have to crowdfund to have this treatment that extends their lives significantly.
This is a very rare cancer. Generating the level of evidence required to submit to NICE has been difficult, and funding is not available. Research is essential. The national lead on rare cancers must be able to link across the UK for every person to have the opportunity to participate in research and benefit from advancements that develop through fast-track programmes. The national lead will need to address time-limited interim access pathways to clinically appropriate treatments for rare cancers—while longer-term commissioning decisions are under consideration—where published clinical evidence and specialist expertise already exist. Time is not on the patient’s side.
When will the clinical lead be appointed? Is the database already live across the whole of the UK? Will the lead be able to review individual funding requests for exceptionality where no alternative exists, so that patients with rare cancers are not left without access to life-extending treatments and, importantly, so that they and those who love them are not left without hope?
(6 months, 2 weeks ago)
Lords ChamberMy Lords, Amendment 27 would ensure that the person in question has made independent contact for information from their local assisted death service provider and has not been subtly coerced or pressured by someone who thought they ought to consider an assisted death. Getting information to inform decision-making is crucial to supporting autonomy. Patients must be able to access all the details they need about an assisted death from a place that is not their primary source of care, their doctor. Having alternative independent sources of information for an assisted death gives greater latitude for patients to understand their choice, and at the pace they need.
This Bill, as the sponsors have made very clear, is about autonomy. People’s autonomy in decision-making depends on having the information they need, and in any format that they require, as they drive their information-gathering process themselves, outside of the intricacies of the relationship with clinicians. The power imbalance between the doctor or senior nurse and the patient can be a distorting influence. This amendment is designed to give the patient agency in how they learn about an assisted death.
Amendment 42 would require that the person in question is fully informed. Having an assisted death is a hugely consequential choice for someone to make. Their understanding of the drugs they will take, how the process works and the consequences for self and others is crucial. I am concerned the Bill does not include enough details about the process through which this can happen. The Bill discusses but provides very few details about how this service is to be provided and funded. It feels like a black hole in the Bill.
The Delegated Powers and Regulatory Reform Committee noted:
“One might expect the integration of the assisted dying system with the NHS to involve a substantial degree of new regulation but the powers contain next to no indication of the shape or substance of the regulatory regime that is intended for VAD services. Instead, they give Ministers almost unlimited powers to legislate in that area by statutory instrument”.
It goes on to say in the report—I should declare that I am a member of that committee—that Clauses 41 and 42
“are skeleton provision because they are ‘so insubstantial that the real operation of the Act … would be entirely by the regulations or orders made under it’”.
The committee recommended that the delegated powers in Clauses 41 and 42 be removed from the Bill, and, if alternative delegated powers in relation to the services are introduced, that
“they are appropriately justified, include sufficient detail and statement of principle to understand the intended regulatory system, are limited to what is necessary to meet their objectives, and are subject to the affirmative procedure”.
In a similar way, there are glaring gaps in the Bill. Clause 5, on
“Preliminary discussions with registered medical practitioners”,
specifies in subsection (6) that a doctor
“who is unwilling or unable to conduct the preliminary discussion … must ensure that the person is directed to where they can obtain information and have the preliminary discussion”.
Nothing more is said, though, about who may provide that information, what their qualifications are and whether there is any government or regulatory oversight of those providing such information; nor does the Bill address the need for a trusted and neutral source of information.
Whether it is a register, an agency or a local assisted dying service, all get to the heart of legislating in this way. None of the detail seems to have been worked through. If this is to be a private service, the regulation envisaged in the Bill is entirely inadequate. If this is to be an NHS service, is it to be fully integrated or a separate service? How we do this on the NHS does not seem clear at all.
The fact that somebody has a terminal diagnosis of six months automatically triggers SR1, so that part of the amendment is superfluous. There are things in amendments that automatically happen but which they would put in the Bill, but they do not need to be put in the Bill by the amendments because they already happen.
I am grateful for the clarification on goalposts moving. What the noble Lord is saying is correct, and there is not going to be any change to what has been said previously. I hope that he and your Lordships’ House will forgive me if I have not put it as clearly as certainly the noble Lord would have liked. I will still make a review of the words and ensure that everything is clear. I hope that will be helpful.
I listened really carefully to the Minister. Am I to understand, in my simplistic, non-legal and non-ministerial way, that the drafting of an amendment will be down to us and the Public Bill Office? If that wording, however inadequate, is then voted into the Bill at that stage, advice on workability would be given, and therefore a further correction to vote would be at Third Reading. Is that correct?
That is the normal way of doing things. I hope that too is helpful.
Amendment 27, tabled by the noble Baroness, Lady Finlay, would require a terminally ill person to have
“made independent contact with their local voluntary assisted death service for information”
in order to be eligible to request assistance under the Bill. However, the fact is that a local voluntary assisted death service is not defined, and the concept does not feature anywhere else in the Bill. Furthermore, no mechanism is provided for assessing whether this eligibility requirement has been met. That would render the Bill unworkable as drafted, and would require further amendments to ensure its workability.
Amendment 28, also tabled by the noble Baroness, Lady Finlay, would add two eligibility requirements for a person seeking an assisted death under the Bill: first, that the person was eligible for benefits from the Department for Work and Pensions via the Special Rules for end of life, the SERL process; and, secondly, that the person had received a home visit from their GP in the six months preceding their request for an assisted death. Not all terminally ill people opt to apply for, or are eligible for, certain benefits at the end of their life. Those people who do not claim would therefore become ineligible under the provision as drafted.
The Bill and the SERL system also have different definitions for end of life. The Bill defines “terminally ill” as six months to live while the SERL process uses 12 months. That would be operationally confusing. Equally, not all terminally ill people will necessarily have had a recent home visit by a GP. That again poses operational challenges for GP resources.
Amendment 28 refers to SR1, the medical evidence form that clinicians issue to evidence that a person is at the end of their life. It is unusual for forms of this nature to be put into primary legislation, and the form by itself does not establish eligibility for benefits. Furthermore, referring to the form in primary legislation could result in delivery challenges should the DWP amend that form at any point in future.
Amendment 38, tabled by the noble Baroness, Lady O’Loan, would introduce several qualifications to the eligibility criteria in Clause 1. This amendment could cause operational challenges for assessing doctors and panels. As drafted, the amendments contain undefined and unclear terminology and it is not evident how these new criteria should be assessed. Noble Lords may also note the risk that the amendments could give rise to challenge on ECHR grounds as they would lead to a difference in treatment for those who have a history of mental health conditions, suicidal ideation or self-harm. Any differential treatment would need to be objectively and reasonably justified to comply with ECHR obligations.
The noble Baroness’s hands are not tied behind her back. Ultimately, whatever the EHRC says and whatever the equality assessment said, we have to decide here whether we believe that, because of problems surrounding the convention, we should make amendments. I am very happy to discuss any of them. It is clear—Stonewall Jackson is back—that I am not that persuaded that we need changes, but I am more than happy to discuss them. I would welcome a discussion with the noble Baroness, and anybody else who wants to come along, about amendments that she is particularly worried about. I am starting from the proposition, which is reflected in the equality assessment, that the courts are very unlikely to make much change here. I am fortified in believing that by what the noble and learned Baroness, Lady Butler-Sloss, said. I am happy to take any other questions.
My Lords, this has in many ways been a fascinating debate, which has clearly illustrated the problems of this being a Private Member’s Bill and the difficulties that we are having in trying to raise issues and draft amendments to improve it. There have been a lot of suggestions about how the Bill could be made safer because of the concerns about coercion and protection for people. I will not take time commenting on every comment made, but I am grateful for all of them.
On the lasting power of attorney, I caution against dismissing this going into the Bill, given the number of complaints that go to the Court of Protection, where lasting powers of attorney have been abused by people who hold them. That needs to be looked at carefully.
I appreciate the fact that the noble and learned Lord, Lord Falconer, has begun to look at enhanced assessment for people who may be particularly vulnerable. It would be helpful to know when those amendments will be before us for us to consider them and whether that will be before we get into further rounds of amendments, which we will then be told are poorly drafted or not workable.
I am very grateful to the noble Lord, Lord Wolfson of Tredegar, for re-emphasising the criteria about having a fully informed decision, including the capacity to make that decision voluntarily. If I heard the noble and learned Lord, Lord Falconer, correctly, it sounded to me as though he is willing to accept my Amendment 42, which seeks to insert the word “fully” ahead of the word “informed”, to ensure that a fully informed decision is being taken.
I will make some comments on poverty. Unfortunately—
Sorry, I do not want to create false hope. I do not believe that the word “fully” is necessary. The noble Baroness is right to say that I never made that clear. I do not believe that it is necessary because I went through all the provisions that required the information to be given anyway.
That is disappointing, because the Committee, I think, would greatly welcome recognition from the noble and learned Lord that some of the things that we are trying to put down are seeking to improve the Bill. Perhaps we could work further on them.
On poverty, unfortunately, the SR1 does not happen automatically; there is no automatic trigger. The point of that amendment was that one wants to make sure that a person who may be in real financial straits and who has never known that there may be benefits for which they are eligible has someone ask them, “Are you finding things particularly difficult? Do you know that there are some benefits that might help improve your quality of life?”, irrespective of whether they do or do not wish to proceed. It is not to stop them; it is to make sure that they can access what they need.
The Ontario coroner’s review reports that there are people who, because of financial stringencies, have sought an assisted death—and been approved for one—but then dropped that request when there has been fundraising and donors have come forward to bail them out of their difficult circumstances. Saying that there are no such cases is really difficult. As I understand it, it is our duty to society to try to narrow the gaps on poverty and not just accept that, if you are in poverty, you may want to take this decision. There were some expressions of slight horror, I think, at the way in which the noble and learned Lord expressed his dismissal of poverty.
There is one final thing that I want to clarify; I feel, professionally, that I must. The noble Lord, Lord Markham, has referred on a few occasions to his mother being “helped on her way”. I am sure that the doctor was not giving the noble Lord’s mother a massive and lethal overdose of drugs, which is what would happen under this Bill. They may well have been giving her a little more analgesia or some other medication in order for her to be comfortable. That is routine clinical practice when people are dying. At that point, we as clinicians will say to the family, “Look, they don’t seem comfortable and they really are near the end”, and we will give a bit more analgesia—possibly an anxiolytic as well—which will allow the person to gently let go of life and die.
We know that pain is a potent driver of respiration and that people cannot let go of life until they are comfortable and out of pain. Sometimes it is a small dose; sometimes it is a larger dose. That is not what we are talking about in this Bill. It is important that the people out there who are listening to this debate do not think that we are going around shortening life by giving people the dose of analgesia or the anxiolytic that they need at the end of their life.
I am not going to go through all the other comments that have been made because of time—this has been a long and very informed debate—except to request that the equality impact assessment be looked at again. Although it may not be the opinion of the noble and learned Lord that it is inadequate, we have heard substantially from people who know equality impact assessments well that they are unhappy with it. I do not see the harm in it being revisited and retabled for us so that we can have an up-to-date version. Perhaps the same should go for the impact assessment, since there are concerns that the numbers in it may be inappropriately low. With that, I beg leave to withdraw my amendment.
My Lords, I am grateful to my noble friend Lady Cass for having clarified that so well. I welcome my noble friend Lady Campbell back to the Chamber and thank her for her contribution, with all her in-depth experience, which complements and builds on that of my noble friend Lady Grey-Thompson.
This debate has gone right to the heart of an area that is not clear in the Bill, which is whether this is or is not a medical treatment in terms of providing an assisted death. There seems to be lack of a clarity on that. When the Bill was in the other place, the Bill Committee, in an exchange, highlighted the ongoing confusion around the point and the profound consequences of it. One member of the Committee asked the sponsor whether doctors would have to suggest assisted dying to every potentially eligible patient as they are required to do with all medical treatments—you must inform the patient of everything that is an option for them. The sponsor replied positively that doctors are required to set out all the available options. The sponsor was then asked again by a different member of the committee about doctors having a duty to raise it with every patient, to which she replied they did not and that it should be down to professional judgment. There is a fundamental conflict there for the routine doctor looking after a patient.
Earlier today, we heard about the concern over ableist attitudes. I have to say that one does see them. It is not uncommon to hear people say, “Oh, it must be awful to be like that” in relation to somebody who has a disability of some sort. Of course, nobody wants to be disabled. I have never come across a patient who has said, “I want to have spinal cord compression now”. Of course they do not. Nobody wants it, but in the event, you have to try to not get into a very negative view with the patient and make sure that you make options available that are likely to improve their quality of life, irrespective of whether they extend their life.
It would be important for the noble and learned Lord to confirm whether he considers assisted dying to be a form of medical treatment, and if it is, to say whether doctors have a duty to raise it with every potentially eligible patient. There has been concern that some patients might be hinting that they want to talk about having an assisted death, but they cannot quite verbalise it. As anyone who has taught communication skills knows, when you are in doubt, you answer a question with a question and you keep on exploring so that people will tell you what they really want to know and think about, and you use their own words, because people have different words for different things. That is quite common. The Bill needs to make it absolutely clear what it is because requiring an assessment will be quite different if it is being suggested by a doctor versus if it is, as we debated earlier on today, instigated by the person themselves.
The medical royal colleges and equivalent bodies are clear: they do not regard assisted dying as a medical treatment and would prefer it to be delivered outside medical settings. My professional group, the Association for Palliative Medicine, has expressed the view that assisted dying services should be implemented outside usual medical practice. The BMA does not believe that assisted dying should be integrated into existing care pathways. Fraser Rickatson from Care England pointed out that in its survey,
“some expressed very clearly that this goes against their ethos as a care service”.
Michael Mulholland from the Royal College of General Practitioners told our Select Committee:
“The whole question of making decisions for assisted dying is against everything that I have been trained in and I have practised for 30-plus years. The outcome at the end of life has been that we will support and care for you and provide palliative care, as best we can in the circumstances”.
He went on to say:
“As a college, we would hope that this goes on to the face of the Bill that we would have a separate service”.
We have had discussions about people’s internal feelings, possible external pressures and coercion that may be felt by a person, the difficulties of assessing those and all the grey areas that my noble friend Lady Cass has referred to in this spectrum that we deal with every day in clinical practice. There are fundamental issues that this debate has raised that need to be clarified as a way of going forward.
My Lords, I will be very brief. We have heard the most powerful support for these amendments from the distinguished most severely disabled Members of this House—people who really know what their conditions mean and who all support these amendments. We know also that all the major organisations representing disabled people have spoken against, or cannot support, the Bill.
How can we ignore that without being patronising and paternalistic? What possible good reason is there for us or the noble and learned Lord to know better? What possible good reason can there be, therefore, for us not to accept these amendments and say that, subject to any minor drafting details, they are accepted in principle now?
(7 months, 2 weeks ago)
Lords ChamberMy examination of the gynaecology waiting lists shows a gradual decline since August 2023. However, I absolutely agree with the noble Baroness that the waiting lists are far too long: it is unacceptable. We are now seeing 57% of gynaecology referrals being seen within 18 weeks, compared with 62% across all specialities. I do not want to hide behind improvement, welcome though it is, but we also know that almost nine out of 10 women on the gynaecology waiting lists are waiting for an outpatient appointment. That is why the big change through the 10-year plan is absolutely crucial, as we move from hospital to community. In the women’s health strategy renewal we will be focusing very much on improvement of gynaecology care. I share the noble Baroness’s view on that.
My Lords, looking beyond gynaecology at women’s healthcare overall, do the Government recognise the importance of public health messaging? Breast cancer is the leading cause of mortality in 30 to 50 year-olds. Often it is diagnosed late, yet there are some important public health initiatives such as good diagrams in women’s changing rooms in large stores. I hesitate to mention the name of one chain —although I am tempted to—where there are excellent diagrams to help women understand that, if they have any symptoms at all, they should seek help. There are similar messages about mental health in places that women go. It means we are dealing with women in a more holistic way, irrespective of age.
The noble Baroness is absolutely right, and we are taking every opportunity to find the right ways to communicate with women about their healthcare. If I had to give a big message, it would be, “Don’t not put up with it”. That is a basic challenge to get across, because so many women do put up with health challenges when they should not. Many women’s health challenges have become normalised—“It’s just part of life, it’s your age” and so on—and I am very keen that, in the renewed women’s health strategy, we will take on that myth and also take on the services to match that.
(7 months, 2 weeks ago)
Lords ChamberIt is the turn of the Conservative Benches and then we will come to the Labour Benches.
(7 months, 2 weeks ago)
Lords ChamberWe have been focusing our efforts, as I said, on whether changes to the law are required to allow wider access to, for example, adrenaline nasal sprays, which are a welcome development. Our focus is on that, rather than on the appointment of a tsar, to which the noble Earl referred. We will be establishing national clinical directors, and I am sure that this will be considered in that regard.
My Lords, with the disaster of poorly managed allergy, only 24 ICBs have been able to state the extent to which they have services, and none are able to state whether they have a specialist nurse and dietician. Will the Government use the opportunity of the single patient record to provide guidance to ICBs for commissioning, to make sure that those who have serious allergies, such as we have heard about, can get the advice and support they need and be guided to the most appropriate way to manage their allergy in the immediate emergency and in the long term?
I certainly agree with the noble Baroness that the single patient record gives us all sorts of absolutely key opportunities, including in this regard. It is important that we note how common allergies are—they affect nearly one-third of the UK population. Although in most people allergic reactions can be mild to moderate, in some cases they are severe. We need to cut that risk and, in particular, tackle the approximately 50 suspected cases of deaths each year that we currently have. I agree with her contention.
(7 months, 3 weeks ago)
Lords ChamberMy Lords, Amendments 16 and 114 propose that anyone who is currently, or was in the year preceding their first declaration, deprived of liberty under the Mental Capacity Act will be considered to lack capacity for the decision to seek an assisted death. Amendments 16A and 114A extend this to those on whom an application has been made but not necessarily completed. Given the data, there is good reason why these amendments from the noble Baroness, Lady Keeley, should be considered.
Section 4 of the Mental Capacity Act 2005 requires that decisions made on behalf of individuals who lack capacity are made in their best interests and with the least restriction of freedom. This amendment can only probe the eligibility assessment process because we are at a transition point from the overloaded deprivation of liberty safeguards system possibly to liberty protection safeguards. Implementation of the 2019 Mental Capacity (Amendment) Act, with the concomitant refresh of the MCA code to incorporate liberty protection safeguards guidance, is planned for early next year, but no firm date has been set.
Deprivation of liberty safeguards authorise arrangements that restrict liberty in hospitals and care homes for those aged 18 or over when necessary for care and safety in their best interest and there is no other way to look after them. A standard authorisation under Section 4A can be given by a local authority, valid for up to one year, to a hospital or care home after a series of six assessments within a 21-day period. Section 4B allows for an urgent, seven-day deprivation of liberty, renewable once, to sustain life or for vital acts pending a Court of Protection decision or while the standard process is under way.
Urgent DoLS applications arise from acute crises. In 2023-24, 58% of applications were urgent. Temporary incapacity in acute hospital settings is often due to acute delirium in cardiovascular events, infection or medication effects. Of course, when a person improved and regained capacity, the DoLS became inapplicable.
However, the system is completely overloaded. There were over 334,000 applications in England alone in 2023-24, taking an average of 144 days for assessment. Only 44% were fully assessed and only 19% were completed within the required statutory 21 days. This goes to the heart of the problem. As local authority records are not integrated with health records, neither the panel nor the assessing doctors in the Bill will always have details of applications and outcomes. Different medical record systems exist in different trusts. Access to GP records is variable, absent or very limited, because some GP practices have not signed to give trusts access to their GP records. There is no access to social care clinical information systems, no information sharing between social care and medical records, and no access to the details of safeguarding information held by local authorities.
Although police call-outs may trigger the GP being notified that a call-out has occurred, no details are given, meaning there is no access to police records of what went on. Even when psychiatry services ask, such information is not readily given from the police national computer network. We will discuss later whether a panel can access this information, as it may be a clear pointer to domestic abuse.
Without a requirement to even interview the family, how will anyone know what has gone on? Hence the amendment. The very fact that an impairment of capacity serious enough to precipitate a DoLS application has occurred should act as a yellow flag when eligibility is being assessed.
Although the numbers are relatively small, the 2023-24 data shows that 3% of fully assessed DoLS applications were rejected. However, it is noticeable that half were due to a change in circumstance and a fifth because the criteria were not fulfilled. I expect to be told that this amendment, intended to protect vulnerable adults, has adverse implications for individuals with temporary hospital-related incapacity, potentially restricting autonomy because they had had a previous episode of seriously impaired capacity. However, individuals with irreversible conditions, such as advanced dementia or lifelong severe cognitive impairment, may remain ineligible long term, which aligns with this safeguard’s intent.
I am grateful to my noble and learned friend Lady Butler-Sloss and my noble friend Lady O’Loan, who have supported this amendment, and to the noble Baroness, Lady Keeley, whose amendment to my amendment intends to increase safety by capturing the larger number comprising 56% of applications that had not been completed.
I anticipate that the Minister will say that this amendment poses legal difficulties for those who lack capacity when it was temporary but serious enough to prompt DoLS, as it creates a statutory presumption rather than case-by-case assessment for anyone with a DoLS or LPS history. I hope therefore that this short debate will mean that a previous impairment of capacity will act as a yellow flag: an indicator that risk may be elevated when an application is assessed.
It is known that an episode of impaired capacity serious enough to trigger restricted liberty can signal further episodes of delirium in over a fifth of people, or be the first pointer to dementia. I hope this will encourage recognition by the noble and learned Lord, Lord Falconer, of the need to re-examine the balance of safety in cases where unrecognised indications of impaired decision-making could all too easily lead to an excess of poor assessments and inappropriate assisted deaths. I beg to move.
Amendment 16A (to Amendment 16)
My Lords, I am grateful to those who have contributed to this discussion. I made it clear at the beginning that I was probing. I am particularly grateful to the noble Baroness, Lady Hollins, for pointing out that one of the difficulties for assessors is in knowing how reliable the information that they can access is. It seems that we need a way to make sure that people who could be particularly at risk have an enhanced level of assessment for the protections relevant to them.
I am sorry; should I not be speaking now?
I apologise to the noble Baroness. I was being told by the Whips that my noble friend Lady Berger has to withdraw her amendment first. I apologise for the discourtesy.
That is fine; I was hoping to sum up, and then I would willingly hand over to the noble Baroness, Lady Berger, to withdraw the amendment. I think that we need to make sure that the face of the Bill makes it clear that there is a level of particularly enhanced assessment for several groups of people—this will be only one group—who are, for whatever reason, particularly vulnerable. I hope that the number of meetings that we have will include everybody who has a concern over this, going forward to Report stage. It is of concern that the code of practice for the Mental Capacity Act has still not finished being updated. I hope that we will see an updated version next year, because the one currently in place is, in some ways, a little bit out of date, given the modern world we live in. With all that, if the noble Baroness would like to withdraw her amendment, I will be delighted to withdraw mine.
My Lords, I shall speak to my Amendment 26 in this group. It is important to remember that Clause 1(1)(d) of the Bill simply states
“is registered as a patient with a general medical practice in England or Wales”.
It does not require anything more than that. I will explain why I have tabled an amendment looking at a home visit, because, as my noble friend Lady Gerada has said, patients will be looked after by many different members of a primary care team but will be legally listed and registered with the named GP, because that is how the funding flows to the practice for care delivery. We must not confuse the two, and the notes held in the practice are important.
The person may actually be receiving most of their care in secondary or tertiary care, as the noble Baroness, Lady Falkner of Margravine, has pointed out, but if this qualifying condition is to have any meaning, there must be substance in it, with a clinical record that can be drawn down in assessment. That does not mean that the GP has to have anything to do with providing an assisted death, but it seems sensible that the clinical record, which will have the record from previous GP practices if the patient moves, can be drawn down.
Data suggests there has been a fall in home visit rates over time. Most home visits undertaken by primary care team members are indeed to people who are seriously ill. The data shows that in October 2025 there were over 462 home visits by GPs, which comprised about 1.7% of all face-to-face consultations registered by a practice that month, or 1.1% of all contacts. While that percentage may seem low, particularly as care moves into the community, it is important to remember that the pressures on primary care teams have increased, with more listed patients per GP and more complexity. In addition, there is less continuity of care, with patients often seen by several different doctors in a practice, and different members of the team. During a hospital stay, patients are likely to encounter, on average, 18 to 27 different healthcare professionals. All those conversations and details should be entered in the hospital record, but they may not be well entered, and the information sent to the GP after admission may be a rather simplistic summary about more of the physical aspects but not necessarily psychosocial details that may be recorded somewhere in the depth of a hospital record.
Why does all this matter? It is because the living conditions and atmosphere in a home reveal an enormous amount about pressures and influences on a person who is ill in a way that is never ascertained in the consulting room. The well-groomed patient’s home can reveal overcrowding and poverty, where others in the household are dismissive or even verbally abusive in front of the healthcare professionals who visit. For most patients, a home visit can allow the person the confidence on their own territory to talk about their hopes and fears in depth, and about why they seek an assisted death. They are not intimidated by the hospital or GP venue, knowing that other patients are waiting outside and aware that others may notice that they have been crying when they leave through a crowded waiting room.
In evidence to the Select Committee, we heard from the Royal College of General Practitioners, of which I declare I am a fellow, that any assisted dying service should be seen as a stand-alone, specialised service that GPs and other healthcare professionals may opt in to provide. They stated that it is neither appropriate nor practical for this to be deemed core GP work, and they do not want any blurring of lines with the palliative care that they provide, which has already been described by my noble friend Lady Gerada. That position was confirmed in a motion at the RCGP Council last week. The GPs were clear in evidence to the Select Committee that they have no spare capacity in the working day to take on additional duties related to providing an assisted death. For some, a lifetime of 10-minute contacts will have built long-term relationships, but that does not apply to everyone.
As the Bill does not require any inquiry of the family about the person’s circumstances, the clinical record from the GP practice about a home visit may be the most revealing way to ascertain the true situation and decrease the risk of coercion being missed, as my noble friend Lady Grey-Thompson has referred to. The GP record must be available to whoever is undertaking the assessment and assisted death service provision.
In terms of ability to see the GP, I support the evidence that we heard from Caroline Abrahams of Age UK, who said that older people often report that better access to a GP would make a huge difference to their world, and that two in three struggle to make appointments or communicate with their GP. Sadly, I am afraid the evidence in Wales is that in 2023 two-thirds of patients said to the Older People’s Commissioner for Wales that they had difficulty in getting an appointment, and that had gone up from one-third in 2022.
The Demos commission report, which was led by the noble and learned Lord, Lord Falconer, found that a doctor supporting the person and their family
“are the key elements that … should be included in any future framework for assisted dying”.
So I ask him: is that the reason why the requirement to be registered with the GP is included as a qualifying condition? Perhaps he could clarify a bit further.
The noble and learned Lord’s commission report envisaged that the assessing doctor would know the patient well and have an established relationship. In his “Newsnight” interview, he also confirmed that if the patient was young, it would be a sensible investigation for family members such as the parents to be interviewed if that young person was asking for an assisted death. Does he recognise the importance of putting some kind of stable primary care relationship at the heart of information that is available about the circumstances of the patient?
It might help the House if I answer those questions, because they are rather at the centre of the debate. Before I get there, I should say that, in the view of the sponsors, the requirement to be registered with a GP practice reflects the reality, which is that in some cases you will have a relationship with your GP but in other cases you will not, despite your best efforts to do so. The reason for the relationship with the GP’s practice was that it provides a central place for records to be kept. The noble Baroness, Lady Fox, rightly identified myriad references in the Bill to GP practices, and noble Lords will see that it is informing the GP of every step that is taken. As ever, though, the noble and learned Baroness, Lady Butler-Sloss, puts her finger on it: you cannot possibly rely on people having an established relationship with their GP, and that is not the protection.
The point made by the noble Baroness, Lady Gerada, seems to be key, and it is reflected in what the noble Baroness, Lady Finlay, has said. The people looking after you are those who should be putting their input into what the right course is. The wrong answer to this is ludicrous hurdles that you have to get over. I do not call the speech of the noble Baroness, Lady Lawlor, ludicrous, and I unreservedly withdraw that in relation to her, but having to have seen your GP six times in the previous years is not the way to deal with it. Surely the way to deal with it is to put in the Bill—and I am more than willing to discuss how we do that—how the multidisciplinary team, which might be GPs, oncologists, nurses, physiotherapists or social workers but it might not, get to have some input into it.
What I am taking away from this debate is this: do not think about the GP being able to provide it, because they will in some cases, but they will not in others. Think instead about how you get the multidisciplinary team who are looking after the patient who wants an assisted death to give the appropriate input. Again, the right course is to talk to the people who have some expertise in relation to this and think how we build that into the Bill. It is not in the Bill at the moment, but I think we can put it in.
Can the noble and learned Lord clarify whether he would consider amending the Bill to ensure that information is sought from those who have provided care to the patient during the course of the serious life-limiting illness that has led them to request an assisted death, whether that is from primary care, a hospital or a private sector provider? Would that also include information from members of the family, as he suggested in the Demos commission, when the person is young and when there are circumstances that would be particularly pertinent?
Yes, we should get the information from those responsible for the care of the individual in a health sense. However, I am not willing to commit myself to that in relation to the family. The person making the decision should think, “What should we do about the family?”—but what if the patient has not seen their family for a long time or are at odds with particular family members? I believe that it should be done very much on a case-by-case basis.
May I just offer a different perspective on this? It has been an interesting debate. One of the main reasons I am supportive of assisted dying is kindness—kindness to the people who are scared about the inevitable end of their life and kindness in that they face a lot of pain. They see assisted dying as a way of relieving themselves from that pain.
In this debate, are we saying that people in prison are not deserving of that kindness? People in prison have been deprived of their liberty because of the crimes they committed, and that is the punishment that they have been given in the face of the law. That is the debt being paid to society. But are we saying at the same time that they do not deserve the same kindness that we would give to others and that they should face pain because they are in prison, whereas others should not? That is my perspective on this.
My Lords, I put a question to the noble Lord who has just spoken. I am really concerned—
The noble Baroness is intervening on somebody who made an intervention on somebody else. We got a very severe talking to about that before, so I do not think that is allowed.
(7 months, 4 weeks ago)
Lords ChamberMy Lords, the noble Baroness, Lady Berger, has opened up an important point in this debate and her excellent opening speech certainly highlighted many of the issues.
The noble Lord, Lord Winston, spoke about cognitive reasoning. The evidence is that cognitive reasoning is well-developed at the age of 18 but that other aspects—such as being sensitive to stress and social influence, impulse control and emotional regulation—do not develop by that age. The evidence is that these carry on developing until the age of 25.
I found it interesting to hear that noble Lords consider that the age limit for children or young people driving in cars with peers should potentially be raised. That is because of the problem of peer pressure. When I had the pleasure of having a visiting professorship in the Netherlands, I came across a fairly horrifying case of a young man in his late teens who had been diagnosed with a very aggressive tumour. His friends all came round and said, “When are you going to go for euthanasia?” He had not even had discussions on treatment, and this happened to be a tumour that was going to be very chemotherapy sensitive. I was quite shocked at the influence that a peer group can have on somebody.
The noble Baroness, Lady Hayter, spoke about suffering and pain. One of the difficulties we have with the Bill is that neither “suffering” nor “pain” occurs anywhere in it.
I wonder whether the noble and learned Lord, in considering how he manages this group of amendments, will recognise that one solution may be to require an enhanced assessment of those between 18 and 25 if the age limit is not going to be raised. Young people should have a more in-depth assessment, not only of their—
The noble Baroness will know that, at present, an 18 to 25 year-old with a terminal diagnosis has the legal capacity to withdraw consent to treatment. Do they go through a different capacity assessment from somebody who is over 25?
I am delighted that the noble Lord has asked me that question, because it reminds me of a patient I had. He was a young man with an advanced testicular tumour and had refused treatment. He was referred to me, and I looked after him for a couple of years, during the time that he became more and more ill with his metastatic disease. He consistently refused treatment. However, when he was moribund, and his parents had come in and were sitting at the bedside, he suddenly asked me, “Is it too late to change my mind and have treatment?” At that point, I was indebted to my local oncologist, who I phoned, and we arranged transfer that day to the Royal Marsden Hospital, which then treated him because that was his wish. My assessment every time I saw him was not to persuade him to have treatment but to allow him to talk about his fears and difficulties. That is the role of specialist palliative care when you are looking after these young people who are very vulnerable. I am simply suggesting that, due to the way the Bill is written, the assessments may not be adequate.
I listened to the noble Baroness’s individual case. My question was very specific. Is somebody who is 25 or over given a different mental capacity assessment based on their wish to withdraw treatment from somebody who is 18 to 25? That is the specific question based on what the noble Baroness is now suggesting happens in the Bill.
The issue with the Mental Capacity Act is that each assessment must be done individually. It relates to the decision that is to be made, the size of the decision, the time and the personal characteristics. There is no absolute. If we are talking about safety in relation to the Bill and avoiding abuse, I am simply trying to suggest that one way forward may be to ensure that the assessment of young people’s eligibility is particularly thorough. That may mean having different criteria and looking at whether they have pain or suffering.
Lord Winston (Lab)
I wonder whether the noble Baroness might be kind enough to clarify. She is, after all, a hugely respected individual in the field, of which she is such an expert—I do not doubt that for a moment. Sarah-Jayne Blakemore, a fellow of the Royal Society, has been spending her time looking at peer pressure. That is what her publications have largely been about. Is the noble Baroness really suggesting that a young person of, say, 18, dying of a horrible and painful cancer, would be subject to peer pressure? They might be subject to pressure from doctors but I doubt that they would be subject to peer pressure.
I was simply relating what I found when I was in the Netherlands relating to peer pressure on young people because of the normalisation of euthanasia across that society.
My Lords, I will very briefly raise my serious concerns about the three amendments that remove the specification for domestic abuse training. They are Amendments 290, 366 and 931. In the Commons, this was a significant area of concern for all MPs, specifically the risk to those suffering domestic abuse, and, as such, the sponsor of the Bill there accepted the amendment that introduced explicit requirements for training on domestic abuse, including
“coercive control and financial abuse”.
I listened very closely to the intervention from my noble and learned friend about the definition contained in Clause 56(2) that refers to control and financial abuse. But just because the definition of domestic abuse in the Bill includes coercive control and financial abuse, that does not mean training on domestic abuse will always include both those things. A training provider would not have an obligation under the Bill to cover all aspects of the definition, whereas the Bill, as currently drafted and as we received it, includes specifically both coercive control and financial abuse in that training. I urge my noble and learned friend to reconsider those amendments, based on the contributions in the other place, and to ensure that training covers and encompasses all those specific elements.
My Lords, I have some questions for the noble and learned Lord, Lord Falconer, about his Amendment 6, because my concerns also relate to the amendment in the name of the noble Lord, Lord Moylan. It does not seem to reflect the way that seriously ill children behave.
I have looked after children dying of malignancies. They knew that they were dying and asked really straightforward questions. They would ask about how they would die and would want to have in-depth conversations. I recall one little boy who asked me if he could play football in heaven, after another little boy in an adjacent room had died a few weeks earlier. These children asked for explicit details and wanted to have lots of conversations. Another one said that he would die after his goldfish died. Sadly, that was prophetic and when he was close to death, he asked his divorced parents to come in and promise to look after his siblings together. These children know each other; they want to ask questions and need to have them answered.
I am not sure how, with Amendment 6, doctors are meant to respond to these children when they ask questions. At the moment, you respond gently and openly, and explore with them what they are really asking about in an age-appropriate way. I have a concern that this could make people feel risk-averse about having open communication with these children, and let children remain isolated with their fears. They hear about assisted dying on the news and in the media; the ethical aspects are part of the senior school curriculum in some areas. I am really concerned that Amendment 6, while well-intentioned, and the adjacent amendments, might actually make the day-to-day looking after of these children as they are dying more difficult.
Amendments 170 and 405 seem to lower the threshold for communication. I am grateful to the noble Baroness, Lady Coussins, for pointing out that whenever an interpreter is used they must be a registered public service interpreter, to avoid the poor communication scenario which I referred to last week. Speech and language therapists are essential, so can the noble and learned Lord, Lord Falconer, explain how with one would judge “effective”, as is listed in his amendment, and assess “reasonable steps”? These seem very subjective and I am not sure how they would be monitored. Others have spoken to the other amendments, so I look forward to hearing the comments from the noble and learned Lord.
I will speak briefly to raise attention to Amendment 170, which has recently been added to the group. In an effort to short-circuit, we will come to the issues of interpreters much later on.
I have laid Amendment 174, which quite simply says that an interpreter must be over the age of 18. It will not surprise the noble Baroness, Lady Merron, that I have a whole cluster of amendments to deal with what may be inadvertent situations that are not covered off for under-18s. I invite the noble and learned Lord to look at that amendment to see whether it can swiftly be clarified and dealt with, along with the others that relate to children.
In this group, I will also speak to the noble and learned Lord’s Amendments 332, 417 to 419 and 425, which I believe are a genuine attempt to deal with the report from the Delegated Powers and Regulatory Reform Committee. It advised the sponsor of the Bill to remove the Clause 15 power and to align the other clauses, because there were inconsistent wordings. I want to reiterate that reassurance was given in the other place that there would be one second opinion by another doctor. This goes back to the noble and learned Lord’s opener: when we talk about “cannot”, we need to cover that off in the Bill. The Bill was covering death or illness—obvious situations where the function cannot be fulfilled—but “will not” is obviously a different scenario.
Unless the doctor is unable to perform that function, for whatever reason, if we do not stick to the word “cannot”, we will potentially get the opening up of the ability to choose a number of doctors and maybe having some kind of discussion. Then they may not want to act, which may be for the reasons outlined by the noble Baronesses, Lady O’Loan and Lady Goudie. Then we might have a number of assessments or discussions that do not become a formal refusal which is then documented. I do not think the noble and learned Lord intended, by changing Clauses 10 and 13, to broaden the scenarios where a further referral could be made to any situation in which the doctor is unable or unwilling to continue; I think this has happened inadvertently. I know that my noble friend Lord Harper has laid amendments regarding particular scenarios beyond “death” and “illness”, and I think that the Minister in the other place, Mr Kinnock, mentioned family circumstances or emergencies. Perhaps the way ahead here—I am trying to pre-empt a further group, when we get to it—is that we could have a clause that outlines more circumstances than the two that are in the Bill.
Obviously, as lawyers, we know we can never cover every circumstance that would justify a doctor saying, “I can’t do this function any more”, not “I won’t”. Perhaps there could be a system whereby a doctor who wants to withdraw, and his or her circumstances are not in the paragraphs, should have to go to the panel and say, “I’ve got a situation that isn’t within the framework of the legislation, but I can’t for these reasons perform that function”. So I hope the noble and learned Lord will not move those amendments, as he has promised, but we could come back to this in the group that deals substantively with exploring scenarios where the doctor cannot act.
My Lords, we now come to issues around residency. My Amendment 10 is a probing amendment. I had to word this this way, because I was trying to put in other wording about residents in the Crown dependencies who may be treated in England or possibly Wales, but I was told that that was out of scope. After several attempts at wording, this seemed the only way for us to address the issue. I make it clear that I do not want make England and Wales a destination for death tourism. Therefore, I will be withdrawing Amendment 10, but it is the only way I can address this major loophole.
In the Select Committee on the Bill, I raised the issue of those who live in the Isle of Man, Jersey or Scotland, where proposed legislation has different eligibility criteria to the criteria outlined in the Bill. Many patients from across these borders are treated in England. Patients from Jersey regularly go to Southampton in ambulance flights or, if the sea is calm, by sea. Similarly, patients from the Isle of Man go to Liverpool. They go for treatment procedures, including radiotherapy and all types of investigations and procedures, because on those islands the facilities are, understandably, relatively limited. A cross-border flow from Scotland is therefore less than this.
A patient who is seriously ill may be transferred for treatment. When they are aware that they have a rapidly progressive, serious and life-threatening illness, they may want to be transferred back to their home to avail themselves of an assisted death in that area. We know that, at the time of being given bad news, suicidality and thoughts of death are at their most prominent, because patients are shocked and often have not actually considered their own mortality in depth; therefore, it is when they are being treated in England that they are most likely to raise the question of an assisted death when legislation is passed in their own jurisdictions.
In Select Committee, I asked Minister Sackman from the Ministry of Justice what the position would be for a doctor, nurse or other healthcare professional involved in arranging transfer back to the Isle of Man or Jersey, knowing that that transfer would facilitate an assisted death outside England and Wales, and the patient would not be eligible under the parameters of the Bill. The response from both the Minister and from Paul Candler, who was her accompanying official, was that it would indeed be a criminal offence to facilitate such a transfer, because they would be caught by the Suicide Act. As Paul Candler explained, the Bill essentially carves out from prosecution people who are acting in England and Wales in conformity with the scheme set out in the legislation. So an assisted death being arranged outside England and Wales is outside the parameters of the scheme of the Bill and would therefore be caught by the 1961 Suicide Act.
I asked the same question of Sir Max Hill, as he was Director of Public Prosecutions. His reply was that if you are operating as a medical or other professional within the legal jurisdiction of England and Wales, you must obey the law of England and Wales. He said:
“the guidance is simply to obey the law of the country in which you are acting, taking decisions and the rest of it. I think, I am afraid to say, that it is as simple as that”.
I ask the noble and learned Lord, Lord Falconer, what is the position for doctors and nurses treating any very seriously ill patient, principally in Liverpool or Southampton, who may say, in the course of an in-depth conversation about their illness, the potential course of it and so on, when they may be contemplating death for the first time, that they want to go home to have an assisted death in their own home? What discussions has he had with the Medical Defence Union and the BMA about this legal liability? What is the legal position of these doctors if they actually accede to the patient’s wish to return home?
I will now turn to my other Amendment in this group—
Lord Pannick (CB)
I am sure that the legal advice the noble Baroness has been given is absolutely correct. My point is that surely this problem arises now. This Bill does not change the position in any way.
With all due respect, I am not aware that the legislation has actually been enacted in either the Isle of Man or Jersey.
Lord Pannick (CB)
Until it is enacted, there is not a problem. When it is enacted, the problem arises, whether or not this Bill is enacted.
We are discussing the wording of this Bill, with due respect. I raise this as a concern for clarification. It needs clarification because, if noble Lords are anticipating that this Bill and the legislation in the other jurisdictions will pass, we cannot leave a legal loophole or difficulty that might jeopardise the care of patients coming to England from the Crown dependencies. That is why I have raised it.
I turn to Amendment 11. Currently, the Bill speaks of the person being “ordinarily resident” in England and Wales, but there is a problem with “ordinarily”. In 1983, Lord Scarman stated in a House of Lords judgment that
“‘ordinarily resident’ refers to a man’s abode in a particular place or country which he has adopted voluntarily and for settled purposes as part of the regular order of his life for the time being”.
So far, so good. However, in the healthcare context, the 2012 Review of Overseas Visitors Charging Policy said:
“The vagueness of the definition means that OR”—
ordinary residence—
“is difficult to interpret and apply on an individual case basis”.
People fell through the gaps and the NHS was not recovering its costs. Then, during his time as Immigration Minister, the noble Lord, Lord Harper, pointed out that
“we need to do a better job of making sure that front-line professionals have a simpler system”.—[Official Report, Commons, Immigration Bill Committee, 7/11/13; col. 290.]
The problem with the definition in the Bill is that it could cover someone who is now living in another country but has an address of convenience in England and Wales for whatever reason. We know that there are thousands of empty properties owned by people who are not living permanently in this country. Apart from the more than 187,000 homes that are owned by people living permanently abroad, there are 5.5 million people who are British passport holders or have residency visas to live in the UK but are living abroad permanently. What will be the position of these people if they wish to access an assisted death here? Currently, they would not be eligible for NHS treatment if it were to be funded by the NHS. If they came to live in the UK for a year, they would then become eligible for the NHS, but, with the prognosis of six months or less, they would be expected to be dead within that time. Of course, this assumes that there is any accuracy in prognostication, which there is not.
Let me put to your Lordships a scenario that is, sadly, not infrequent. A person working for the Foreign and Commonwealth Office in an embassy abroad becomes seriously and terminally ill and is repatriated to the UK. Their house is rented out and they have to give notice, so they go to live in a different area—one, they hope, with good specialist palliative care services that can provide them with support. However, not being able to be in their own home and surrounded by their own things, and without contact with people who would otherwise have a role in their lives, they easily become very depressed.
Let us look at that scenario under this Bill. Suppose they decide that they want an assisted death. They will not have been resident for 12 months prior to making a first declaration to request an assisted death. Will that person, who may have worked all their life in service of this country, now be ineligible? I see that the noble and learned Lord, Lord Falconer, is nodding that they would. I believe that, under the wording of the Bill—
Hold on—my nods must not be misinterpreted. I understand the question. If, for example, you live in Britain and you go and become the First Secretary in the US, you do not cease to be ordinarily resident in the UK. If you are a soldier and serve for nine months abroad, you do not cease to be ordinarily resident. I was nodding only to say that I have got the question, but I would not necessarily agree with the solution that the noble Baroness proposes.
I am grateful for that clarification and we will come back to the noble and learned Lord’s comments on these issues afterwards.
If one reads Clause 1(1)(c), it not only says that the person has to be ordinarily resident but that they have to have been
“so resident for at least 12 months”.
Consequently, unless being in an embassy is still seen as being resident for the previous 12 months, the point that the noble Baroness made is entirely right.
I am most grateful for that intervention, because many people who work in the embassies abroad do not live in the embassy; they live in apartments, houses or whatever in its vicinity.
The wording of the Bill prompted my probing amendment, so I ask the noble and learned Lord, in the light of this, whether he is comfortable with the vagueness of the term “ordinarily” or whether he sees merit in reconsidering this wording carefully to clarify the residency requirement to avoid death tourism and ensure that others are not discriminated against. I beg to move.
My Lords, I had originally tabled Amendment 15, which I withdrew, because it looked like I was trying to be nasty and stop the bucket list for people or stop them going on holiday, but that was not my intention. My intention was to think about residency in a proper way. Bearing in mind previous comments from the Minister, I have ended up replacing one amendment with four in order to be precise throughout the Bill.
In essence, I am not convinced that simply being ordinarily resident is enough. I say that because you can be ordinarily resident in more than one country. You can only be domiciled in one country. The issue here is: who is the Bill trying to cater for? I think, frankly—bearing in mind Amendment 23, proposed by my noble friend Lord Frost—that we should be looking at UK citizens and those whom the Government have decided to give indefinite leave to remain, and keep it at that. The element of “ordinarily resident” is that you can have settlement for a purpose. The single purpose could be that you just state that your settlement—your purpose for being ordinarily resident—is simply to take advantage of this Bill. I do not think that is enough.
As regards the amendments that have been tabled by my noble friend Lord Lansley, I also do not want this extending to someone being able to live anywhere in the United Kingdom. Indeed, my noble friend Lord Moylan has perhaps anticipated some of the situations where people have moved abroad and then want to come back. The essence of the Bill should be that it is focusing on providing provision in this country for people who permanently live in this country, which is why “domiciled” is a better test than simply “ordinarily resident”, because, as I say, you can be ordinarily resident in more than one country.
I am sorry to hear of the noble Baroness’s surprise. I am simply setting out where the Government have particular concerns within the scope to which I referred. My noble and learned friend Lord Falconer may be able to comment more appropriately, if he wishes to do so, on the points that she raises.
Amendment 14, in the name of the noble Lord, Lord Moylan, would widen the eligibility criteria to include UK citizens of pensionable age who are living abroad. There are two main issues with this amendment. The first is that the UK has obligations under international agreements that enable residents of partner countries to receive certain benefits, including some health service provision, in the UK. These agreements are, as I mentioned, with the EU, EEA states and Switzerland. As I set out, these agreements prevent restrictions based on nationality, although they permit those based on residency. Therefore, the amendment would have the effect of opening access to provision of assistance under the Bill to EU, Swiss and EEA residents of pensionable age, provided that they satisfy other eligibility criteria. Widening access only to UK nationals of pensionable age would be contrary to the UK’s obligations under those agreements.
Secondly, by including those who have “moved to live abroad”, the amendment would enable pensionable-age citizens from Northern Ireland or Scotland who have moved abroad to access the provision of assistance, in accordance with the Bill, if they satisfy the other eligibility criteria.
For all the other amendments in this group, on which I make no comment, any workability concerns are less significant. For example, Amendment 10 would remove two eligibility criteria from Clause 1, while Amendment 13 would change the requirements relating to ordinary residence in England and Wales. As Clause 1 is largely descriptive, these amendments would have limited legal effect without corresponding amendments being made to operative provisions later in the Bill.
While these are choices for noble Lords, these amendments may introduce inconsistencies and ambiguity into the Bill. As noble Lords will be aware, these amendments have not had technical drafting support from officials, so the way in which they are currently drafted means that they may not be fully workable, effective or enforceable—but, of course, the issues raised are rightly a matter for noble Lords to consider and decide on.
Given that Jersey and the Isle of Man, if I am correct, are not EEA countries, how is the contract for health service delivery affected by this Bill in the light of the problems that I highlighted right at the beginning of what has turned into quite a lengthy debate? I was trying to look at a carve-out for those countries so that those contracts could continue, but I was told that it was deemed out of scope of the Bill.
I am sure the noble Baroness will understand that I am restricted in the comments that I can appropriately make here. I heard my noble and learned friend Lord Falconer say that all these matters needed consideration, and I am sure that he will expand further on that very point.
My Lords, I honestly think that is a smokescreen. The Bill says, in a way that the law has recognised time and again—because this Parliament has to make choices from time to time about who gets benefits—that the benefits of the Bill should be given only to those who ordinarily live in this country. That phrase has not given rise to problems. The courts understand it, doctors understand it and the panels will understand it. If we in this Parliament cannot say that we will give rights only to those who are ordinarily resident, which is a phrase that means something, we will never be able to determine who is entitled to our rights. I say, with the greatest respect to the noble Baroness, Lady Coffey, that what we are trying to do in the Bill is clear. I invite the noble Baroness, Lady Finlay, to withdraw her amendment.
My Lords, I will now sum up at the end of this very interesting debate. I am relieved to hear that people do not want doctors to be immigration officers. I am a little disappointed that the noble and learned Lord, Lord Falconer, has not accepted the amendment from the noble Earl, Lord Howe, because it is so straightforward. If, as the noble and learned Lord says, it would not be a problem for over 99% of patients, it would not be a problem to be satisfied. It would add a degree of security for doctors who are being asked to provide these assessments of eligibility.
I was also glad to hear from the noble Lord, Lord Harper, that those working for the Foreign, Commonwealth and Development Office, in embassies or wherever, are covered, and that that is not a problem. The noble Lord, Lord Carlile, raised the issue of those working as volunteers abroad for a very long time. I hope that the ability that applies to Foreign, Commonwealth and Development Office workers also applies to those working for charities, such as some of the major charities, who may be abroad for a very long time but view their permanent home as the UK.
I remain concerned about Jersey and the Isle of Man. What conversations has the noble and learned Lord had with the Public Bill Office about how to get this in scope? My attempts have failed, and I understood that here in the House of Lords we are not able to widen the scope of the Bill. I worry that without widening the scope of the Bill, we will not address it, and those doctors treating patients with all kinds of really serious illnesses, particularly in Liverpool, as referred to by the Front Bench, and in Southampton, could inadvertently find themselves in a very difficult position, which would be an unintended consequence of this legislation.
I do not know whether the noble Baroness has discussed with the Public Bill Office the BMA’s proposal in relation to this, which is that it is not a crime under the Suicide Act if the assistance you give is not unlawful in the Isle of Man or Jersey. The idea that that is out of scope seems obviously wrong, because the Bill is crafting an exception to the Suicide Act. If the noble Baroness and I go to see the Public Bill Office and explain that, I would have thought that there would be no difficulty about the scope.
I would be delighted to go with the noble and learned Lord, because he may have a little more success. The Public Bill Office has been unfailingly helpful. This is no criticism whatever of it; it has worked incredibly hard. With that and the promise of going to see it with a matter of urgency, I beg leave to withdraw the amendment.