Terminally Ill Adults (End of Life) Bill

Baroness Smith of Newnham Excerpts

Committee stage
Friday 6th February 2026 Lords Chamber

I shall refer again to Covid-19 and those living in care homes who depended on NHS treatment and GP care, as well as their care home teams. Many of those teams went out of their way, beyond the course of duty, and with their managers working long hours and helping their patients, but the lives of those in care homes were made all the more precarious by the official approach of the block-booking of beds at care homes, facilitating the discharge of patients into those homes, many of whom were Covid positive. Moreover, and this is something I saw myself, NHS guidance to GPs at the time—we are talking about early 2020—but since removed from the website, was not to visit care homes. Bureaucracies have their own momentum. If we establish a state service, it may end up killing far more than we or they would like.

[Baroness Smith of Newnham (LD)]

My Lords, like the noble Baroness, Lady Hayter, I have recent experience of visiting care homes. My late father was in a care home from November 2024 until December 2025. Unlike in the noble Baroness’s case, although he was well cared for, there were a range of issues that I was aware of while he was in the nursing home, and in the period before he entered the nursing home, that might be relevant for noble Lords to reflect upon, not least because they also provide a lesson for those the noble Baroness has talked about who are in nursing homes but still have capacity, are able to form a view and would be able to say, “I still want an assisted death”.

The reason why I say that is precisely because of issues of fluctuating capacity, infection, delirium and medication. Before my father went into a nursing home, there was a period when I assumed he had dementia. He was becoming more and more vague. He was on a new medication, and over time the doctors had said, “Double the medication”, then, “Quadruple the medication”, and he became more and more vague and did not seem to know who I was.

Then, for whatever reason, the medication was changed. This was nothing to do with dementia or mental capacity; it was to do with blood pressure. The medicine was taken away and something else was put in its place, and my father returned. It happened to be around Easter, and it was like some Easter resurrection. He was able to function normally, as he had before.

Then my father got pneumonia, went into hospital and was let out into a care home. In the home, they said, “We’re slightly worried about cognitive decline and impairment”. At a review meeting they went through his medications, and I said, “Can you tell me everything he’s on?” They listed the medicines again, including doxazosin. I said, “Why’s he on that? That caused problems before”, and they said, “We don’t know, really. The hospital put him on it”. There had been nothing in his medical notes to say, “Don’t use this medication”.

The new GP, to whom my father had been referred, spoke to me on the phone and was entirely happy to accept my wholly non-medical suggestion that this medication was not appropriate. He was taken off it again, and a mental health practitioner was asked to call me. The suggestion had been that my father should have a capacity test while in the nursing home, but this practitioner said, “To be honest, there is not much point, because if somebody’s been in a care home for more than a few weeks they’re not even going to know what day of the week it is”. So the view was they would not bother testing my father for capacity. He subsequently had on his death certificate that he had vascular dementia. If a full capacity test had been done, maybe that would have been diagnosed at a point before he died rather than after. It was never fully diagnosed while he was alive: there was merely a suggestion that there might be an issue.

The point is that if medication can affect somebody who would otherwise have capacity, it might affect the resident that the noble Baroness, Lady Hayter, referred to. In a nursing home, that person could equally get an infection or be prescribed something for which there were contraindications, but would there be sufficient recognition of that? Although some nursing homes will have brilliant care, not all of them will, and my father was—

[Baroness Hayter of Kentish Town (Lab)]

Would the noble Baroness accept that could have been even more so than if her father, or my husband, were at home all day without any medical or nursing staff around them? These people are more likely to pick up those infections than equivalent people who are living at home.

[Baroness Smith of Newnham (LD)]

I can see a point to that, but the message I was given by the mental health practitioner who rang me from the mental health team—I think he was a psychiatrist—was basically that once somebody is in a home, these tests become much more difficult because of the nature of the environment. That may differ from home to home—and yes, when my father had pneumonia and was clearly delirious, he was at home. If there are concerns, we should surely make sure, if people have a cognitive impairment, that we know that is the case, but if somebody does not—if there are the short-term issues that are being discussed in the amendments, in particular Amendments 111 and 112—then surely those people who want an assisted death would want it ruled out that they had some sort of cognitive impairment if it were temporary and reversible. That is the sort of thing we really need to get right, not only for those people who have an impairment but for those who actually do not have one but would not then be able to have the assisted death that the noble Baroness, Lady Hayter, and others might wish them to be able to avail themselves of.

[Baroness Fox of Buckley (Non-Afl)]

My Lords, this small group, which I did not expect there to be so much rich conversation about, indicates why care homes really are an important focus for the Bill. I absolutely want to echo the points made by the noble Baroness, Lady Finlay, about care home workers: they have not been consulted. Might the noble and learned Lord make a commitment to meet up with representatives of the care sector to discuss the very real issues that the Bill will create for them if it passes? We can recognise that many of the people in society who will, at some point, be eligible for assisted death if the Bill passes will probably be in care homes, because that is where elderly people are, who might well get terminal diagnoses—rather than 14 year-olds. We are talking about a different cohort; that has at least to be considered. Some of the previous contributions have therefore been very helpful. I really thank the noble Lord, Lord Blencathra, for laying out so clearly why this should matter to us all.

I am somewhere between the noble Lord, Lord Deben, and the noble Baroness, Lady Hayter, on care homes because, for the purposes of this discussion, I would rather not go down the care home horror story route. However, even if you accept care homes as positive places in general, there are still huge challenges in the Bill in relation to them. I will lay out some of these challenges.

Despite the horror stories, in most instances, care homes are incredibly important to society’s care of the elderly and frail. Although they are too often neglected—understatement of the year—by state support, they are fulfilling an incredibly important public service. By and large, the care workers I know and have encountered—far too many of them, for a variety of reasons—are heroic. They are poorly paid, underappreciated and overworked, and we know there is a massive turnover of staff. These things have been well covered in different discussion. I also find that many care workers are amazingly generous and creative in their care of our older citizens who are in need of residential care.

Despite all that, we must be realistic. There are difficult, challenging circumstances in care homes, and we have a social care crisis, which we talk about all the time. This is the living example of that crisis. There is not enough space in care homes, and they can be chaotic—not because of the staff. In a day-to-day sense in care homes, standard mental capacity assessments are done by overworked care workers who are not clinical professionals. I worry that these assessments used for treatments might bleed, in some way, into the future as a way of signing off a new medical treatment on the block: assisted dying. We must recognise that as a possible concern.

I am slightly contradicting myself now, but we must recognise the kind of pressure that people are under. Many elderly people in care homes have had things like do not resuscitate orders or inappropriate diagnoses. I think it was the noble Baroness, Lady O’Loan, who made a point that I too can relate to, where an elderly person was given their meal and drink, and it was ticked off by care staff as having been eaten and drunk but it was not; the elderly person did not even know what it was, but it was ticked off anyway. That was not cruelty, on behalf of the staff; it was rushing around. They did not feed that elderly person, but they were not starving them; they simply did not have time to sit down and do anything about it.

This matters because a large number of people who may fall into eligibility because they are terminally ill will be people whose capacity needs to be assessed, and they will live in care homes. The problem is that care homes are a gathering of people who have fluctuating cognition. The main thing that goes on in care homes, beyond care, is that cognition changes all the time. The idea that a firm, autonomous decision will be made in those circumstances needs to be, at the very least, queried slightly.

We are talking about UTIs, dehydration, infection or the effects of medication, but the big one, of course, is undiagnosed dementia or early dementia that no one has yet noticed. Alzheimer’s Society data shows that only two-thirds of those with dementia have received a formal diagnosis. Sadly, there are massive waiting lists, so the diagnosis rate is low—and in Wales, inevitably, it is sadly even lower. There is also hidden dementia, where no one is trying to get the people assessed but it is there none the less. Due to the heightened risks of cognitive impairment issues and the instability of cognition, we definitely need to take these amendments seriously. We need to have specialist clinical assessments to ensure that capacity means capacity and is not part of a “good days, bad days” scenario.

Anyone who has had relatives in care homes, or spent any time in one, will know all about the “good days, bad days” situation. You can go in one day and chat away to a coherent and articulate older person, but the next time you see them they are completely incoherent and confused. You then go back and they are chatting away again.

Terminally Ill Adults (End of Life) Bill

Baroness Smith of Newnham Excerpts

Committee stage
Friday 30th January 2026 Lords Chamber

[Baroness Jay of Paddington (Lab)]

My Lords, I wonder whether the House will listen to the point made by the noble Baroness, Lady Gerada, which is that she is probably the only person in the House—and certainly the only person who has spoken this morning—who has had practical experience of assessing people. She spoke very well about the issues which have been raised this morning in relation to the Covid epidemic, saying that, “There was not a clinical or ethical necessity to see people face to face to make proper judgments”. I really want the House to accept that someone with that practical experience should be listened to.

I will make one other short point, which is that I am again surprised, frankly, by the number of people who have spoken this morning who, without, as it were, even mentioning the question of the circumstances of those who are terminally ill and are asking for assistance, talk so much about administrative procedures, the way in which a network might be formed, or the way in which technology could be used. Frankly, I would like to hear a little more from everybody who contributes about the circumstances and problems of those who are actually seeking assisted dying and who may well be those who, frankly, for one reason or another—because they are physically in a way that they cannot do it, or they are perhaps geographically remote or have other circumstances which prevent them being able to access a face-to-face agreement or a face-to-face assessment—none the less very much want an assisted death for their terminal illness. Their concerns should be the ones we primarily consider.

[Baroness Smith of Newnham (LD)]

My Lords, the noble Baroness, Lady Jay, just asked us to consider the circumstances of those who are seeking an assisted death, but I would like to give a salutary lesson—I am sorry to disagree with the noble Baroness, Lady Gerada.

My father was taken ill during the Covid pandemic. He did not have a smartphone and was not able to have an in-person consultation. He had jaundice. The message he came away with from speaking to a doctor on the telephone—the doctor had never met him—was, “It’s pancreatic cancer”. My father then spent weeks saying goodbye to all his relatives and friends. By the time relevant tests had been done, it was shown that he did not have pancreatic cancer.

That demonstrates one of the flaws of doing something remotely, which is: what are the messages? The doctors are not getting the cues and the patient is not necessarily hearing what the doctor is saying. I am sure that the doctor did not say, “Mr Smith, you have pancreatic cancer”—clearly, they could not have said that—but that was the message that my father heard. I therefore very strongly support the amendments in the name of the noble Lord, Lord Evans of Rainow, and two of the amendments from the noble Lord, Lord Blencathra.

However, I want to express one serious reservation about Amendment 406A from the noble Lord, Lord Blencathra. If the discussion has to be taken by video conference, it might not be appropriate to say that in every circumstance the only person who should be on that call is the patient. We all know that, when you go to the doctors, even if you are there in person, you have capacity, you are a rational person and you do not have any cognitive difficulties, you do not hear everything. Sometimes, if it is a difficult diagnosis, you do not take everything on board. For some people who are told that they have a terminal diagnosis and understand that that is the case—unlike in the false case of my late father, who did not have a terminal condition at that stage—we know what their settled will is. There are several people in your Lordships’ House who have what their settled will is very clearly on record, in the public domain. But there will be other people with whom the doctor has never spoken before, so they cannot know whether it is somebody’s settled will in a way that the legislation requires.

If, then, there has to be a video conversation, or indeed an in-person conversation, it might be appropriate for there to be an independent advocate or somebody else who would support that person and could say, “The doctor did not really say that, you know”. We need to think about real-life cases. Yes, we need to understand from the medical profession, and it needs to be from the perspective of somebody with a terminal diagnosis, but we also need to understand the reality for ordinary people who do not have the advantages of the internet or the accessibility that Members of your Lordships’ House have.

[Baroness Keeley (Lab)]

My 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?

Terminally Ill Adults (End of Life) Bill

Baroness Smith of Newnham Excerpts

Committee stage
Friday 16th January 2026 Lords Chamber

[The Lord Bishop of Chester]

My Lords, this is an important and moving debate. It is an honour to speak in it and to follow some of the previous contributions. These amendments highlight the fact that eligibility is not the same as motivation. I agree with almost everything that has been said before me; I will not delay the Committee by repeating those points.

There are two things that I want to bring to your Lordships’ attention. First, I remind noble Lords of points made by my right reverend friend the Bishop of Gloucester. The Bill, if passed, will apply to those in our prison system, for whom there will be very particular motivations, which we need to make sure can be fairly applied to them.

Secondly, if the Bill is passed, we have a duty of care to those who survive the deceased. Some of us have had the privilege of sitting with many bereaved families. In my experience, there is almost not a death which does not leave a huge wake of pain behind it. Indeed, the one or two in which that has not been the case have been some of the most distressing pastoral situations I have ever dealt with. Where there has been an element of choice to that dying, the “what ifs”, the “if onlys” and the longings are deeply profound scars, which live with people for a long time. In passing the Bill—if we do pass it—we have a responsibility of care, not just to those considering their own death but to those left behind, those who are caring and those who long to do everything they can to be with those they love deeply, and to support and enable them to carry on living and to do so well.

[Baroness Smith of Newnham (LD)]

My Lords, I will briefly speak to these amendments, in particular to Amendment 30. I know from listening to previous groups that the Minister will feel the need to explain that Amendment 30, as drafted, is not fit for purpose and will not help the Bill. However, in Committee, the important thing is to flag the key issues and to see whether we can put forward proposals—I realise that this is a very tall order—for wording suggestions and ideas that might be acceptable to the sponsor of the Bill. There is a set of issues in Amendment 30 that warrants careful listening and attention.

It is not sufficient to say that the Bill is about providing choice. As the noble Lord, Lord Empey, said, most Members of your Lordships’ House have many advantages that would allow us to get specialist treatment, the opportunities of second opinions, and possibly social care that we might need. Other people do not have that. Therefore, it might be appropriate to say at the end of life, “I do not want to be a burden. I want not to be a burden to my family; I should have an assisted death”. That is fine if the choice is that of an individual who has all their faculties and all the resources available to them saying, “This is my choice, and I want to do that”. But what about the person who says, “Actually I think I need an assisted death because there is nobody to care for me, social care in my area is not adequate, the state cannot afford to fund it and the palliative care is not available”?

The answers to the group the end of last week about palliative care started off a series of quite chilling responses. It was said that palliative care is not equal across the country, but we cannot wait until we get something like equality before this legislation should come in. I think that is what I heard the noble and learned Lord say at the end of last week. But why should some people be put in that invidious position of maybe not really wanting an assisted death, but feeling that there is no or inadequate palliative or social care available to them, when other people would not be making those choices?

It is incredibly important that, as this Chamber in Westminster, we do our duty not just to pass legislation because we think that, in principle, it is what society wants and that, in principle, people might want a Bill that allows for assisted dying; we have to ensure that any piece of legislation passed does not leave certain people more vulnerable. At the moment, this legislation does not do that.

Terminally Ill Adults (End of Life) Bill

Baroness Smith of Newnham Excerpts

Committee stage
Friday 14th November 2025 Lords Chamber

[Baroness Thornton (Lab)]

My Lords, I absolutely agree with the noble Lord, Lord Pannick. The noble Baroness, Lady Finlay, and I have worked together for many years, on many health issues, but I do not think she addressed the issue of why she wants to change the wording.

Given that we worked in 2005 on the Bill that actually put capacity into the legislation, I would be interested to know what her reasoning is. I think that is particularly important because the noble Baroness did not address the issue of choice. Of course, ability, capacity and choice are central to this Bill. I wonder why the committee whose report we have before us did not take any evidence at all from terminally ill people who need to make the choice in this matter. I think that was a grave mistake on its part and that if it had, that possibly would have led the noble Baroness to take a different view.

[Baroness Smith of Newnham (LD)]

My Lords, I was a member of the committee. The committee noted that we did not take evidence from terminally ill people. That was not a decision that we took as a committee. Suggestions were made and the clerks did not, in the end, manage to provide us with witnesses who were terminally ill, but it was not a decision that was formally taken. I agree that, had we taken evidence from—

[Lord Markham (Con)]

With due respect, I must say, as one of the committee members, that that point was put forward on a number of occasions. Unfortunately, there was a majority of people in the committee of seven to five against, by the way the nomination process worked, so it was the feeling of those members not to invite terminally ill people to speak. The minority of us who were in favour of the Bill tried on a number of occasions to hear them, but that was not allowed.

[Baroness in Waiting/Government Whip (Baroness Anderson of Stoke-on-Trent) (Lab)]

I remind your Lordships of the conventions of the House. An intervention on an intervention is not ideal. If we can follow normal conventions, that will be helpful.

[Baroness Smith of Newnham (LD)]

I thank the noble Baroness. I note that my former tutorial partner from Oxford was intervened on, or interrupted, for speaking for too long beyond 10 minutes. I shall endeavour still to be within 10 minutes despite having been doubly intervened on.

The report noted that the committee had not taken evidence from terminally ill people. I will leave it at that in terms of responding to the noble Baroness, Lady Thornton. However, we took evidence, as we were requested to do, on safeguarding and procedures, and, within the confines of a very brief committee, we took a wide range of evidence. Should we and could we have taken more? Absolutely, but within the confines of what we were able to do I think we did a job. I certainly did not at any point speak or vote against, or indeed take any view on, the idea that we should not take evidence from terminally ill people, so it is unfortunate that that has become a topic of debate.

The reason I rose to speak is that the question of capacity versus ability is hugely important. There are references throughout the Bill to the Mental Capacity Act, but to suggest that this one amendment is not appropriate is an unfortunate legal point. The amendment says that people should have the ability to make the decision, but “ability” reaches far beyond the narrow confines of the Mental Capacity Act. At various points in Committee, we will talk about capacity. The committee took evidence on capacity, and a key thing to bear in mind about the Mental Capacity Act is that it was never designed for a life or death decision. We need to be very clear as a Committee of the whole House and as parliamentarians—

[Lord Scriven (LD)]

The Mental Capacity Act is used in life and death issues in healthcare. If someone decides not to have care, the doctor has to ensure that that person has capacity to make that decision, so it is already used in that way.

[Baroness Smith of Newnham (LD)]

My Lords, I am grateful to my noble friend for pointing out that the Mental Capacity Act is used for life and death issues, but it certainly was not designed for assisted dying and I suggest that it is not a robust test for these particular purposes. If we are going to pass this legislation, we need to be sure that we have tests that are as robust as possible.

A particular point that we need to bear in mind is that the legislation was not drafted in the way that it is normally drafted; it was done in a way that was described as “on a shoestring”. It is surely up to your Lordships’ House and the other place to ensure that the provisions we have in place do not look as though they have been made on a shoestring. They need to be robust. Decisions about capacity can be taken at a moment in time. We need to ensure that the decision where someone says, “Yes, I think I want an assisted death”, is when they are at a later stage in their illness.

--- Later in debate ---

[Baroness Smith of Newnham (LD)]

I am indeed, which is why I think it needs to be clearly probed. If that is what your Lordships’ House and the other place intend, we should legislate for that, but I am not persuaded that all Members of this House and the other place will have the expertise that the noble Lord, Lord Pannick, has.

I have probably taken enough interventions for the moment. Others may accept being intervened on for a fifth or sixth time.

It was clear at Second Reading that some noble Lords who are in favour of this legislation want to support it and are open to it being amended, but others simply said, “This legislation is about assisted dying. The citizens of the UK want assisted dying. Therefore, we must support this legislation”. That would be a dereliction of our duty. We need to ensure that any legislation that is passed is robust and that, if noble Lords have passed it, they have probed the Mental Capacity Act and questions of capacity and ability, and that the legislation we get is robust and will stand the test of time.

Ability goes beyond capacity. This matters so much because the simple choice between an assisted death and not an assisted death is not so straightforward. The reason I wanted to speak, and I will come back to this in subsequent groups, was to refer to some of the evidence we took. Evidence-giver after evidence-giver said, “If we are going to have assisted dying”—whether or not they were in favour—“we need to have better palliative care than we have at the moment”.

The Bill, if it goes through, will say that people have to be told their choice between the palliative care available to them and other options. There is a gross inequity in palliative care availability in this country. For some people, there might be a genuine choice between getting the care they could have or an assisted death, and they may get to the point of saying, “The care still is not enough”. In many parts of the country, though, people are not being offered that palliative care, and if we do not make it available, we are potentially creating legislation that causes people not to have the choice that some noble Lords are so passionately advocating for but rather to make constrained choices because the health service is not giving them what they need. So a broader discussion about ability has merits. That is not to cut across the debate about the need for capacity, which will come up at various points in Committee.

[Lord Winston (Lab)]

My Lords, as a member of the Select Committee that the noble Baroness has just referred to, I think she ought to refrain from criticising something that the committee either said or thought. We merely took evidence. As we will see in the report, we did not make those observations personally.