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.