Terminally Ill Adults (End of Life) Bill

Debate between Baroness Grey-Thompson and Lord Empey

Committee stage
Friday 16th January 2026 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I shall speak to three amendments in this group—Amendment 38, in the name of my noble friend Lady O’Loan, to which my name is attached, and Amendments 39 and 68. Amendment 38 seeks to address the challenges of those who have bipolar disorder, borderline personality disorder or other conditions associated with episodic suicide ideation, who face a higher baseline risk of self-harm and suicide. Research indicates that suicidal thoughts and behaviours are significantly more prevalent among people with these diagnoses, even without terminal illness, as reported by NICE in 2022 and Public Health England in 2021. Critically, evidence also shows that suicidal ideation tends to increase following a terminal diagnosis, so without the safeguard of this amendment, the Bill risks enabling assisted dying decisions to be influenced by pre-existing mental health vulnerabilities exacerbated by the receipt of a terminal diagnosis.

I support calls in the Chamber today to look at the benefits system. It is a really complicated process, whether you have a terminal diagnosis or not. It is important to learn from other jurisdictions. The 2024 Oregon official report cited that 9% of those who requested to end their lives did so for financial reasons and 42% requested it because they were felt a burden. I think it has already been quoted that in 2011, the noble and learned Lord, Lord Falconer, with the Demos report, said that no remedial mental health condition should be eligible for assisted suicide. I do not expect an answer in the Chamber on this question this afternoon because it might take a long time—I am very happy to meet outside—but I am interested to understand what has changed from his view in 2011 to thinking that this would work in the Bill now.

Many of the amendments talk about a settled wish. I could almost see how somebody could try to justify that, for someone with a terminal condition and suicide ideation, requesting assisted dying might be a form of suicide prevention. I feel like I am tying myself in knots with this argument, but I think when we hear the argument that people are already dying, we need protection for those groups of individuals. The noble Baroness, Lady Jay, who I do not think is in her place—I am sorry, I do not have my glasses on—raised evidence given in the Select Committee and talked about paternalism. My personal experience is that I do not see much paternalism in the health service. What I do see is an awful lot of ableism, and I think that if we are talking about paternalism, we should be talking about ableism as well. From a disabled person’s perspective, this recognises the intersection between disability, chronic illness and mental health vulnerability.

The panel has already been raised in the Chamber this afternoon. The panel is a really important part of the eligibility determination and deciding whether somebody can go forward. I think that one of the only things that the noble Lord, Lord Winston, and I could agree on today is that words are important. This relates to the place of the panel. I draw your Lordships’ attention to the clarification statement that was issued by the Association for Palliative Medicine this week. Because words are important, I am going to read it. It states:

“In Friday’s … debate (9/1/26), Lord Falconer cited, and misrepresented, expert evidence presented to the Terminals Ill Adults committee last year by the Association for Palliative Medicine … Crucially, panel members would not be required to meet the patient. They would, therefore, have no individual clinical perspective to bring to bear on the person applying for an assisted death. This renders the panel a mere administrative review, stripping it of the very nuance and human understanding that defines robust, compassionate decision-making at the end of life”.


This is why these amendments are even more important in terms of what we are trying to do.

I have previously discussed suicide among unpaid carers and the pressure on them. In Canada, there is a case of a man who had carer burnout and arranged for an urgent assessment for his wife. She died that day. That is listed in the Ontario coroner’s report. There is also written evidence to show that two men who had caring responsibilities for their partners ended up doing a mercy killing, which is often, strangely, very sympathetically portrayed in the media.

Amendment 39, in my name, is about recognising where an assisted death could take place and who will be most directly affected. The settings that could be affected include care homes or nursing homes—communities that care for those living with dementia, frailty, disability or advanced illness, where dependency is a condition of daily life rather than an exception.

It is important to recognise that a significant proportion of people living with dementia or cognitive impairment remain undiagnosed until the later stages of the disease. On average, people with dementia live with symptoms for three and a half years before receiving a diagnosis. Current NHS England and Alzheimer’s Society data show that only about two-thirds of those with dementia receive a formal diagnosis. The diagnosis rate in Wales is even lower. This further underscores the need for a specialist clinical assessment before any conclusion about capacity is reached. If one in three people with dementia are never diagnosed, one in three potential applicants under the Bill may have an unrecognised impairment in capacity. This is not a margin of error that any legislator can reasonably accept.

A recent report by the whistleblower charity Compassion in Care further illustrates the heightened vulnerability of care home residents. Based on evidence submitted by over 1,000 care workers who called the charity’s helpline to express their concerns about the Terminally Ill Adults (End of Life) Bill, the most predominant issue raised in 97% of cases was that of fluctuating capacity, which is common among those residing in care homes. The British Geriatrics Society, which gave evidence during the Select Committee, estimates the prevalence of delirium among care and nursing home residents to be as high as 60%.

Amendment 68 is about protecting autonomy. It would ensure that the right to request assistance to end one’s life remains solely with the individual who is terminally ill. It would prevent any surrogate, family member or medical professional making that decision on their behalf. By explicitly prohibiting third-party decisions, we safeguard vulnerable individuals from coercion or misinterpretation of their wishes.

Finally, I would like to ask the noble and learned Lord a few questions. How will he specifically seek to protect those who are in care homes or who may be vulnerable? How will the Bill protect those individuals who have had previous suicide ideation? Where does the Bill seek to understand the intersection of those with suicide ideation who then receive a terminal diagnosis and whether this is a genuine, settled wish? How, through the Bill, will we be able to offer protection to those who have a previous history of self-harm?

[Lord Empey (UUP)]

My Lords, following on from the proposal in Amendment 39, from the noble Baroness, Lady Grey-Thompson, one of the issues that perhaps is not fully appreciated or understood—it is only if you have actually witnessed it that you get the full implications—is delirium brought about by a combination of medications that are applied. One particular medication can clash with another and can produce a situation which appears almost like dementia, but the patient is not suffering from dementia but delirium. The noble Baroness, Lady Grey-Thompson, expressed that very well.

The noble Baroness, Lady Berger, spoke to Amendment 31. Again, it seems an elementary thing but, whether a person is sufficiently capable at the relevant point in time and is not suffering from delirium and/or dementia is best judged by the clinician who knows and works with the patient, rather than somebody with a white coat who is dashing in and out of a ward room and trying to assess the person on the hoof.

Like the noble Lord, Lord Deben, and others who spoke earlier, I do not like this Bill. However, as I said at Second Reading, like everybody else in this room I am a legislator. We have a role above and beyond our personal prejudices and beliefs.

I must say to the noble and learned Lord, Lord Falconer of Thoroton, that, as the noble Lord, Lord Deben, mentioned, a lot of issues have come up in the past few weeks. Last week, we had the series of amendments that were ably put forward by the noble Lord, Lord Carlile, which dealt with a very serious issue. The week before, we had five separate issues dealing with prisoners, pregnant women, et cetera, and we have had other issues. I know we are only part way through Committee, but if the noble and learned Lord wants the House to compress the process, rather than have to reiterate all this on Report, then I think it would make a difference to how people approach the rest of this legislation if he brought forward coherent amendments that address the issues that have been raised.

I do not mean to be unkind, but there is no point in him getting up every Friday like Stonewall Jackson and saying, basically, “I’m right and you’re wrong”. There is a difference of opinion—a chasm, in many respects—over a lot of these issues. To be brutal about it, we need to see the colour of his money. I hope that would allow us to go forward, but unless we deal with these fundamental, basic issues then we will have a very long slog indeed.

Terminally Ill Adults (End of Life) Bill

Debate between Baroness Grey-Thompson and Lord Empey

Committee stage
Friday 9th January 2026 Lords Chamber

[Lord Empey (UUP)]

My Lords, I am indebted to the noble Lord, Lord Carlile, for bringing to a head one of the critical issues in this legislation. As one of the diminishing number of people in this House who is not a lawyer, I say that we have to find our way through this labyrinthine structure where we have chambers and all sorts of things. Without legal experience, it is difficult even as a legislator to navigate through this.

The point I want to make at the outset is that this significant piece of legislation started off in the other place with the legal process as a fundamental part of the architecture. That was subsequently changed more than half way through its process in the other place, and now we are trying to re-inject it into the system. I would ask the sponsor and indeed the Minister to respond to this. There are so many issues that have been raised already this morning about the consequences of making this change, for which we have absolutely no information whatever.

I remind colleagues that, on our last Friday, there were five separate issues—I repeat, five—to which no response or answer was provided. They were: the issue between England and Wales, the issue between England and Scotland, the issue of pregnant women, the issue of homeless people, and the issue of prisoners. There is no clarity on any of that.

The noble Lord, Lord Carlile, and his co-signatories are attempting in these amendments to at least make the legislation, as the noble Baroness, Lady Finlay, said, less unsafe. The stage we are at in this legislation is probably 75% or 80% of the way through the process and, as with a Meccano set, we are still bolting bits on and taking bits off.

All of this could have been avoided if we had had the proper process of a Royal Commission and a government Bill. This is Heath Robinson-type legislation on such a serious issue. I have to say to the sponsors that, instead of battling this out for the next few months, they would be far better to go to the Government and ask them to appoint a commission and get on with it. Then we would not have to fight our way through this morass.

Not being a legal person myself, I ask the noble Lord, Lord Carlile—given the pressures that we understand are applied to the courts and the Family Division—whether there is a case for the creation of a special chamber for people who are dedicated to this, with the training that would be required. Or, with the pressures that the family court is under, could it be that comparatively junior people end up being designated to hear these cases? Because you are talking about a huge gap in knowledge and experience on a life and death issue.

Maybe these questions cannot be answered now—maybe we will get answers when we come to Report—but the fact is that we are having to ask all these questions and we have no information, no numbers and nothing in front of us. I do not believe that that is a coherent and sensible way to go forward.

The noble and right reverend Lord, Lord Harries of Pentregarth, made a very valid point about the general public’s confidence in who makes such decisions. While I can see the merits, as the noble Lord, Lord Pannick, pointed out, of having a panel with different disciplines, the fact of the matter is that persons who are on that panel have to be appointed by somebody. Is there confidence in the people who appoint them? The court system, however, has a level of public confidence miles above any alternative.

All of these things need to be sorted out. They should have been sorted out before we had this debate today and they have not been. That is where we are. I think that the noble Lord, Lord Carlile, is attempting to put a foundation under this legislation. Leaving issues of principle out of it for the moment—we are legislators and sometimes we have to do things that we do not want to do personally—we are obliged to undertake this process. I assume that he is trying to put a foundation underneath this legislation that would command confidence among the general public, or at least a higher level of confidence than, I suspect, the panel process has. The fact that we have had this change and this flip-flop is very concerning.

I conclude by asking the noble Lord, and indeed, necessarily, the Minister: if these amendments were to be accepted by the sponsor, what would be the Government’s response? The noble Lords, Lord Harper and Lord Gove, have raised this, as have others. I understand that Ministers are in a difficult position. They are technically dealing with a Private Member’s Bill, whatever some of us think about that. Without having knowledge of what the state is going to do, we are legislating for the state to intervene to allow a person to end their life, which is against other legislation that we have already passed. So it is important that the Government should let us know what their responses will be in these various scenarios and I do hope that, when we come to the wind-up of this debate, we will get some clarity.

[Baroness Grey-Thompson (CB)]

My Lords, I speak to Amendment 67 in my name, in which I have sought to bring back the role of the High Court judge. The complexity of this group of amendments is shown here, but I thought that it could be done with one amendment rather than the number of amendments that my noble friend Lord Carlile had to table.

I think that this debate shows many different things. Not least, we have heard quotes about how the noble and learned Lord, Lord Falconer, has changed his mind over time. Others in the Chamber have done so as well, depending on the situation and the specific piece of legislation.

We need to give much more consideration to how this Bill will work in practice; this is one of the fundamental issues. I was disappointed when the High Court judge was removed from the process, because that had given me a level of reassurance. I felt that it gave authority and integrity to the process.

On where we are now, as other noble Lords have said, the toing and froing of this part of the Bill is very difficult. In another place, two-thirds of the debates on the Bill took place with the High Court judge as part of the process. If the noble and learned Lord was minded to bring that back in, it would yet again change a huge part of the Bill.

I thank the noble and learned Lord for meeting me before Christmas, when we had a very interesting discussion on one of the areas I am very concerned about, which is coercion, specifically coercion of disabled people. I am not minded to think that the panel is strong enough to cope with not just the number of cases that they may have to deal with but actually being able to spot some of the things that we have talked about. I have amendments on coercion; I also have amendments on the appointment process of those panel members, which I will not debate now. I know that the noble and learned Lord and I disagree on whether this is the safest Bill in the world. This is not the time for me to ask who has provided independent verification of that, apart from the Bill’s sponsors, but one thing we have to talk about is how we can make the Bill safe.