Terminally Ill Adults (End of Life) Bill

Baroness Cass Excerpts

Friday 20th March 2026 Lords Chamber

[Baroness Hayter of Kentish Town (Lab)]

My Lords, following that, I am concerned about whether I have read Amendment 553 in the name of the noble Baroness, Lady Grey-Thompson, correctly. She did say at the end that maybe not all her amendments were perfectly drafted, so I may have misunderstood it.

As I read the amendment—following after the new Clause 22, as my noble and learned friend has just said —it says that any person, not just a qualifying person,

“between age 18 and 25 wishing to receive assistance under the provisions of this Act must receive consent from a parent or guardian and must be accompanied by an independent advocate in addition to parent or guardian”.

I think I am correct in reading that as everybody, not just a qualifying person.

The idea is that someone at the age of 25 still needs a parent or guardian—if they even know where their parents are. Maybe it is partly because I was brought up in the forces, but I know of people who have taken major life and death decisions by the age of 25 while in charge of military units at war. I have known people—in fact, I see some around the Committee—who by the age of 25 have given birth to children, which seems to me an enormous decision that one takes. I, well below that age, took a decision that meant I would never have children. I know of surgeons who before the age of 25 have taken decisions of a life and death magnitude in surgery. There will be people now sitting on the Bishops’ Benches who will know of circumstances in which big decisions are taken by people well below that age.

I am really surprised that we would be writing this into the Bill for those people. Suddenly, at the point when they are terminally ill and dying, we say that, up to the age of 25, they have to locate a parent—whom they may not have seen for years—and, in addition to the parent, have to have an advocate with them. I find that extraordinarily devaluing of ordinary human life and the ability to take decisions.

As I say, I could have misunderstood the amendment. The noble Baroness, Lady Grey-Thompson, said that she may not have drafted it correctly, so it may be that this should apply only to a qualifying person and not all people. I still have my doubts that we really need to treat adults as if they are really young children.

[Baroness Cass (CB)]

My Lords, I will speak to a number of amendments in this group. I can be briefer on some because the noble and learned Lord, Lord Falconer, has copied some of my homework and taken it as his own—which I take to be a good thing.

[Lord Falconer of Thoroton (Lab)]

I apologise for not acknowledging that.

[Baroness Cass (CB)]

Not at all. When I first saw the term “independent advocates” in the Bill, I worried because, in my clinical career as a neurodisability consultant, I have had some very negative experiences of advocates who allegedly were speaking on behalf of people with a range of disabilities but who, we were fairly clear, were not accurately doing so. Some of their behaviours were, frankly, coercive. I know that my noble friend Lady Hollins will have similar experiences and stories to tell.

“Advocate” means different things to different people. Under the Mental Capacity Act, the role is to support people to have capacity, often in the context of the need to make decisions on life-saving treatments. That is clearly not what we are talking about here.

My amendment to Clause 22(4)(b)—which might now be academic, as the clause is to disappear—tries to frame it as people having difficulty accessing information about decisions they need to make for the purposes of requesting assistance and communicating relevant matters. It narrows it down to a communication problem, in the widest sense of the word.

I am slightly concerned that Amendment 548A, from the noble and learned Lord, Lord Falconer, includes “retaining that information” and

“using or weighing that information”

as part of the process. It is very hard, if someone is not retaining information, for anyone to help them to do so; people who are suffering from dementia or memory loss would otherwise be able to be facilitated to remember things, which they cannot possibly be. If somebody does not have capacity, it is hard to see how an independent advocate can facilitate them to have that. That is certainly not what we want them to do, so I am slightly concerned about that line in the new clause.

As for what that independent advocate should do, the noble and learned Lord, Lord Falconer, and I are on the same page, in that it should very much be about facilitating the effective participation of the qualifying person in relation to the provisions of the Act, where their communication needs would otherwise impede such participation. It is about acting to support communication—both understanding and communicating—but not deciding, representing or driving a particular view.

The noble Lord, Lord Sandhurst, who is not able to be here today, and I have put our names to an amendment that seeks that the independent advocate should not be a relative, carer or someone with professional responsibility, for obvious reasons, because, de facto, the individual should be independent and should have had training. Within that training, it is important that they are able to recognise coercion, domestic violence and many of the other issues that we have recurrently discussed in this Committee.

In summary, certainly, my amendments on the role of the independent advocate are subsumed in the new replacement for Clause 22. However, I still have some concerns about who qualifies.

[Lord Weir of Ballyholme (DUP)]

My Lords, I will speak to my Amendment 553B. It is one of a range of amendments I have tabled, which have been put into a number of groups, to try to deal with some of the concerns that have been raised by disabled people and to provide high levels of safeguards. The amendment overlaps with other amendments in this group, as a lot of us are coming from a similar position, irrespective of our broader attitudes towards the Bill as a whole. As such, I am not suggesting that my amendment would cover all aspects.

There is reference in this amendment to one area that we need to get our heads around: how the independent advocate is selected and from where they can be drawn. In the interest of time, I will restrict my remarks purely to my amendment and let others make the case for theirs. My amendment would ensure that there is the availability of an independent disability advocate with “appropriate expertise”—that is as close as I was able to get to defining this—which must be provided by the commissioner for any disabled person within the definition of Section 6 of the Equality Act 2010.

--- Later in debate ---

[Baroness Noakes (Con)]

My Lords, I want to make a few points following the contribution from the noble Baroness, Lady Fox. First, she referred to MND and the problem with some people who appear to live quite a lot longer than expected. The real problem with MND is that these patients almost certainly will not qualify to be classified as terminally ill under the Bill. The speed of progression of the disease usually means that getting a six-month diagnosis is almost impossible, so motor neurone disease patients will find it very difficult to fit themselves within this. This is, I think, widely acknowledged.

Secondly, all this discussion has been based on the prognosis given by a doctor to his patient. The Bill requires it to be established that the individual is terminally ill for assisted dying to be available. That decision must be made by the first doctor, the second doctor and the panel. These are not doctors giving informal indications to their patients about the amount of time they may have left to live; these are people having to come to a professional judgment. Of course, if they cannot agree on that professional judgment, the decision will not be that an assisted death can be given. It seems that, in the context in which the prognosis is given—that is, to satisfy the definition of “terminally ill” in this Bill—there are many safeguards that would mean that we have a relatively safe definition of six months by the time all those who are involved in the process agree it.

[Baroness Cass (CB)]

My Lords, on the point made by the noble Baroness, Lady Noakes, the person or people who will make the best judgment about prognosis will be the treating team: the treating doctor and the multiprofessional team. I have always been somewhat dubious about how much those successive doctors can add to prognosis, as they will not be specialists in the area. I just make that point.

I am always gratified but slightly alarmed at the faith that noble Lords place in doctors. It was not always what I experienced in practice, when many of my patients arrived with an internet search knowing more than I did about the condition, especially as I worked somewhere where we often saw young people with rare disorders.

A number of things are getting conflated in this debate. When a previously young, fit person walks through the door with a cancer diagnosis, there will be a series of trials and data on the prognosis for that age group with that diagnosis. Then it narrows down as there are the specific features for that individual. Then they start treatment and, as the treatment goes along, your prognosis gets more individualised as they do or do not respond to the treatments they are being given. Ultimately, it may become clear to the treating team that that person is no longer responding to treatments, and it becomes a very individualised prognosis at that point. So although you may start off with statistics, which are very broad, you end up giving the best advice about what you see before your eyes—as the noble Baroness, Lady Hayter, said—in relation to how that patient is responding to treatment and how they are doing.

The further complication that stops you depending entirely on the papers that you have just read is where that person started off with diabetes, heart failure or a series of other complications. There just is not specific data for that complex of conditions that the patient may have, so it will be significantly dictated by clinical judgment, ideally by the whole multiprofessional team. We need to distinguish people with a clear cancer diagnosis, where there is lots of data, from people who have a mix of the more usual things that we see in the elderly population: cardiac problems, respiratory problems, diabetes, Parkinson’s—a whole complex of things. It then becomes, again, something that you cannot refer to in a textbook but something that you see in the state of progression of that person’s symptoms and their reducing response to treatment. I should sit down at this point, as I should not proceed further when my noble friend can speak to this with much greater authority.