Terminally Ill Adults (End of Life) Bill

Baroness Grey-Thompson Excerpts

Friday 30th January 2026 Lords Chamber

[Baroness Grey-Thompson (CB)]

I realise that your Lordships wish to get on to the substance of the Bill, and the points I am about to raise are specifically on the Bill and will have an impact on the groupings we are about to debate. I notified the Chief Whip, the clerks and the noble and learned Lord, Lord Falconer, of my intention to raise them.

The noble and learned Lord, Lord Falconer, explained in his letter this week that he recognises the concerns raised about independent advocates and that following discussions with the sponsor in the other place and their amendments, he has tabled changes. I am raising this now because of the sense of frustration that we are not getting answers to the amendments we are tabling in good faith. I hope that the noble and learned Lord will be able to answer these questions, so that we can move with a bit more pace.

I would like to probe how the changes the noble and learned Lord has suggested relate to what was agreed in the other place. The amendments in the Commons were understood to introduce independent advocates as a mandatory safeguard. This is an area that many of us are concerned about, reflecting the fact that the individuals in scope may have substantial difficulty understanding the process or communicating their wishes. Under the noble and learned Lord’s amendments, a person is treated as having an independent advocate, even if the advocate is not present or involved in the decision-making process. The amendments do not require an advocate to be present when the co-ordinating or independent doctor meets with the patient, nor when the panel considers the case. Advocacy is therefore satisfied by instruction alone rather than active participation. In addition, advocacy is made conditional on request. The preliminary discussion may proceed without an advocate, and a qualifying person may refuse one.

Could the noble and learned Lord please explain whether he considers that this framework preserves the substance of the Commons concession, or whether he accepts that it represents a shift away from a mandatory safeguard towards a more discretionary model? In particular, how does he address the concern that people who qualify precisely because they struggle to understand are required, unaided, to decide whether to waive one of the Bill’s central protections at the very outset of the process?

[Lord Falconer of Thoroton (Lab)]

These questions relate to a detailed amendment to Clause 22 that I tabled yesterday, which provides for an independent advocate to help people who need assistance. I will read the questions the noble Baroness has given me—she did not give me notice of them, and I make no complaint about that at all—but the appropriate place to deal with them is when we get to the amendments relating to Clause 22.

Clause 1: Assisted dying

Amendment 60

--- Later in debate ---

[Lord Hamilton of Epsom (Con)]

Can the noble Baroness recall that last week she told the House that 23% of six-months-to-live diagnoses turned out to be wrong and that people lived longer? Does that not make the whole position of face-to-face diagnosis much more important when doctors so often get it wrong?

[Baroness Grey-Thompson (CB)]

My Lords, technology has gone a long way to helping disabled people to lead inclusive and integrated lives in British society, and I generally support the use of it. But for many of us who worked on the coronavirus legislation, where we had to make very quick decisions, the speed with which we went online made it seem as if, as a society, we had moved decades forward from having to meet only in person. Even your Lordships’ Chamber managed to meet and vote online. But that comes with a set of challenges.

We have to look at what happened during Covid and the huge increase in domestic abuse. It was not just because we did not have to ask people to turn their cameras on. It was deemed that would be upsetting, so we could not see if somebody had been domestically abused. The impact of increasing domestic abuse was also because there was more recording. Even when you look at the technology that we have in your Lordships’ Chamber, it is not foolproof. I was on a call yesterday in my office. The system crashed twice, and the people I was speaking to on Teams did not even realise and carried on talking. We have to think very carefully about how we would use technology.

Age UK said that about 2.4 million older people do not have access to technology in this country and just under 2 million do not have a mobile phone, let alone a smartphone, so if we are going to do this, we need to think carefully about what other provisions will be in place. I agree with the noble Baroness, Lady Berger; why can the panel not go and visit the individual? I think there is something about being in their own home. The noble Baroness, Lady Pidgeon, raised rural areas. What if people do not have the technology? What will be put in place to ensure that there is a suitable online option?

--- Later in debate ---

[Lord Harper (Con)]

I am grateful for that. The final point I want to make is that we had experience during the pandemic of too many vulnerable people, people with learning disabilities, having “do not resuscitate” notices put on them by doctors. I do not want to see a system where, if we had a similar circumstance again, these sorts of decisions would be taken remotely at speed. We know from our deliberations in this House, and it is my experience in the other place, that there is no substitute for doing these things face to face where you can challenge people, ask questions, put people under that challenge and get good answers to make good decisions.

I commend this group of amendments to your Lordships, and I look forward to hearing the response of the noble and learned Lord, Lord Falconer.

[Baroness Grey-Thompson (CB)]

I would like to provide a brief clarification on the back of what the noble Lord, Lord Harper, said about the points raised by Ms Leadbeater’s comments about feeling uncomfortable. It came from a report on ITVX on 6 March 2025. An assessment was taking place with Dr Jess Kaan. I believe family members were there, and then she asked the patient’s family to leave the room so that she could privately ask the patient whether it was a settled wish. The patient said yes, it was. I quote directly from the ITV website:

“For Kim Leadbeater, the virtual consultations did not make for comfortable viewing—she says it has made her think about adding an amendment to make clear that consultations with doctors cannot be done via video call and that they should be done in person”.

[Earl Howe (Con)]

My Lords, in the interests of time I do not propose to summarise the many points and questions that have been raised in this debate. However, I wish to speak briefly to Amendment 320A in the name of my noble friend Lord Wolfson. The amendment seeks to set the presumption that the first assessment by the co-ordinating doctor

“must be undertaken in person, except in circumstances where this is not reasonably practicable”.

It is plain from everything that we have heard in the debate that the first assessment is a pivotal moment in the process set out in the Bill. It is the point at which a co-ordinating doctor must satisfy themselves not only of the diagnosis and prognosis but of the patient’s capacity and will and, crucially, the absence of coercion or pressure, as set out in Clause 10. These are human judgments that depend not simply on what a patient says but on the way that they say it, on physical cues and on the broader context in which the conversation takes place.

I listened carefully to the noble Baroness, Lady Finlay, in particular, as I did to other noble Lords, and an in-person assessment undoubtedly allows a clinician to observe matters that may not be apparent on a screen—for example, who else is present in the room, whether the individual appears comfortable speaking freely or whether there are signs, however subtle, of hesitation or external influence. At the same time, I suggest that we need to be patient-focused as well as doctor-focused, which is why my noble friend’s amendment seeks to recognise practical realities. There will surely, from time to time, be circumstances, perhaps in late-stage illness when a person may be in acute distress, where an in-person assessment is genuinely not possible. The reasons for that could be several, but in those cases we need to ask ourselves whether a live video and audio link would be preferable to a delay, or even a complete exclusion from the process.

I emphasise that the amendment is a probing one. If we decide that provision should be made for certain cases then that would surely be a classic area for guidance or codes of practice, but the key test in every instance would be what is reasonable in the circumstances. My noble friend wants to be clear that this amendment is about setting the right default for arguably the most consequential clinical judgment in the entire scheme of the Bill, while preserving professional discretion in response to the needs of the patient where circumstances require flexibility.

I have deliberately spoken in general terms when talking about what might not be reasonably practicable. The question is really the one posed by the noble Baroness, Lady Hayman: how rigid do we wish the Bill to be in prescribing how the system should work? I hope the noble and learned Lord, Lord Falconer, could set out his vision of how this mechanism will work in practice and how he will ensure that the safeguards that we all want to see can still be maintained if an in-person assessment is not possible.

--- Later in debate ---

[Baroness Grey-Thompson (CB)]

I understand the noble and learned Lord’s comments about “reasonably practicable” in relation to this group of amendments. But the Bill actually has “reasonably practicable” written many times—in Clauses 10, 11, 16, 18, 47 and 50—in relation to the length of time a doctor should take to write a written report. I have amendments to shorten that length of time. I am interested in why the noble and learned Lord does not think—I am sure he is going to say that we will discuss this when we get on to those groupings—that “reasonably practicable” is not suitable in this situation, but is suitable in situations such as the length of time it takes doctors to write a report?

[Lord Falconer of Thoroton (Lab)]

That is a very valid point in relation to this particular amendment. The reason I think some sort of regulatory process from the Secretary of State—a code of practice or something similar—is better is that you can give much more detail and many more examples. You should not be relying on just a particular two-word legal test.

--- Later in debate ---

[Baroness O'Loan (CB)]

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.

[Baroness Grey-Thompson (CB)]

My Lords, this is a really interesting group of amendments, and it has probably raised more questions for me than it has answered. When we talk about injury, I immediately think about people who have had a spinal cord injury and who have become a quadriplegic or a paraplegic.

By the very nature of my former career, I know a lot of wheelchair users who have been through various compensation cases. Luckily, these days the survival rate for someone with paraplegia or tetraplegia is very high. We also have to take that into account. I had not thought before about the impact on anyone who has been in the military. I know quite a few people who are injured through the military. Generally, the public are very supportive of the military and what they have gone through, and we would not want any unintended consequences for them.

When I was looking at conditions such as asbestosis, and others that have been debated on this group, it became very clear that in many cases these conditions present quite late and treatment is then very difficult, and many patients die before the compensation claim has gone through. We have talked before about coercion, and I know that Ms Leadbeater has said in various debates and comments that she is concerned about people being coerced not to end their life.

This is a situation where I could see this happening. If you go online and google asbestosis compensation or spinal cord injury compensation, a plethora of websites come up straightaway with calculators, so that you can have an indication of how much you could possibly gain. I had a look; it goes from a couple of thousand pounds for a back injury—which obviously would not account for this—up to £493,000 for someone with quadriplegia. The figures given as a range for asbestosis were £50,000 to £1 million. That is a life-changing amount of money for many families in this country, and it will colour the decisions they make.

It is slightly strange, because we talk about someone being a burden, but people will make a different decision because they are thinking of their children and grandchildren and protecting them for the rest of their lives. So a lot of clarity is needed to make sure that coercion does not go either way. I would be very interested in understanding what the noble and learned Lord intends to do to offer greater clarification for this group of amendments.

[Earl Howe (Con)]

My Lords, as we have heard, my noble friend Lord Harper’s Amendments 70 and 78 seek to expand the definition of terminal illness beyond illness or disease to include terminal injuries. If this amendment were accepted, it would enable those who have suffered terminal injuries through military service or industrial accidents, for example, to access assistance under the Bill.

It seems to me that these amendments are helpful in at least two ways. First, they raise the question of how we should define a terminal illness or disease. If a person has been injured and has a prognosis of six months, should that person be described as terminally ill for the purposes of the Bill? I suggest that this is not just a question for the noble and learned Lord; it is also one of relevance to Ministers. As we have said on previous occasions, it will be state-run services that deliver assistance, and Ministers will need to be clear on what constitutes terminal illness.

Put another way, if, as the noble Lord, Lord Hendy, rightly said, an injury is legally distinct from an illness, why should people with six months to live for reasons other than an illness or disease be excluded from the scope of the Bill? My noble friend Lord Blencathra argued that adding injury to illness would be a slippery slope. I need to reflect on that. I was not wholly convinced by what he said, because there is a moral case around an injured terminally ill person that we need to resolve. By the same token, if the question remains open, are we happy that it will be left to the courts to expand the definition of illness, if that is what the court decides? One could envisage that happening.

The second way in which the amendments are helpful is the issue raised by my noble friend Lord Sandhurst’s Amendment 829, which seeks to address a specific problem caused by the interaction between this Bill and the Fatal Accidents Act 1976. Having listened to both my noble friends, I share their concern. As Amendment 829 rightly implies, it may not be possible to resolve this through a simple amendment to this Bill. It would be helpful if the Minister could explain whether the Government accept my noble friend’s argument that if the rights afforded to bereaved relatives under the 1976 Act are to be preserved within the terms of this Bill—as surely is equitable—it will depend on the Government to identify ways in which that can be achieved in a legally and politically acceptable way.

Perhaps Ministers and officials could look at this between Committee and Report, and advise the noble and learned Lord, the Bill’s sponsor, so that we can resolve the problem before the Bill gets any further.