Terminally Ill Adults (End of Life) Bill

Baroness Finlay of Llandaff Excerpts

Friday 14th November 2025 Lords Chamber

Moved by

[Baroness Finlay of Llandaff]

2: Clause 1, page 1, line 4, leave out “capacity” and insert “ability”
Member’s explanatory statement
This links to a proposed change to clause 3.

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare my interest as a consultant in palliative medicine in Wales—I have a paid session there. I have received incidental part-time research support from Living and Dying Well, of which I am a non-remunerated director, and I am a patron of several hospices and hospice services in Wales and across the UK.

Before I start addressing this, I thank the Chief Whip for the message that was sent out previously. I hope that the usual conventions and respect for each other will be observed. It was a pity that clearly there was an error yesterday, with a letter that was sent to the press and was being tweeted about at 3 pm. It was addressed to your Lordships, but we did not receive it until 7 pm, and that was after a blank email had arrived. That was an error, but I hope we can be vigilant about the way that we communicate with each other and that we engage in meaningful and respectful conversations.

I wanted to raise that because there has been a question about the number of amendments that are in my name. I am most grateful to the Public Bill Office, which has worked incredibly hard to support us. Forty-four of my amendments are corrections to wording relating to other bits of the Bill and were tabled at its advice to make the intention of another amendment clear. Please could nobody think that the numbers count? It is the quality of the discussion and the intention behind it that matter, because we are really trying to make this legislation work. It has been difficult because financial aspects relating to palliative care have been deemed to be out of scope.

This Bill is called the Terminally Ill Adults (End of Life) Bill. Every patient who is terminally ill has palliative care needs—100%. Some have them at a minor or relatively easily solved level, others have them at a major and complex level. I worry that we are forgetting the importance not only of palliative care but of specialist palliative care in the way that we talk about services being delivered, and the danger that people will not be able—I go to the word “ability”—to make a proper, informed decision if they do not have the choice to have the care that they need and, if they have complex needs, access to specialist palliative care that has links to pain services, radiotherapy, palliative surgery and all the other aspects of specialist services that I have been privileged to work with over decades. I am well aware they are missing in many parts of the country because we have black holes, I am afraid, in the provision of palliative care in some places. It is literally a postcode lottery.

If you are going to make a decision, and you have the ability to make a decision, you must be able to understand the information given to you. That means that you must have accurate facts that you can understand, be free of pressure and coercion—we will come on to that—and have the capacity to make that decision. We will come on to that.

I will focus on the facts that you may need to make a decision. The diagnosis might be wrong: we know that, at post-mortem, one person in 20 is found to have died of something different from the disease for which they were being treated. The prognosis might be wrong: we know from a really good systematic review that a six-month prognosis has a 48% chance of being right. You might be influenced by fear and experiences from decades ago that do not apply to modern medicine and modern specialist palliative care in these days, or you might have misinformation from the internet. It might even be that you put the wrong wording into the internet. Only last week I heard of a patient who believed herself to be dying because she had misunderstood the information that she had. She thought that she had a terminal illness and would be dead shortly. Actually, it was not a progressive terminal illness, but the communication of complex information meant that, when she heard what she thought she was frightened of, she could not take on any more information. The word “safety”, which my noble friend Lady Grey-Thompson raised, is paramount if we are to enable people to make safe decisions. We know that palliative care can identify remediable causes of distress and misunderstandings.

--- Later in debate ---

[Lord Falconer of Thoroton (Lab)]

I will answer that one. No, you cannot do it by power of attorney. You have to do it yourself.

[Baroness Finlay of Llandaff (CB)]

My Lords, given this very long debate, I will try to respond briefly. I declare that I had the privilege of being the first chair of the National Mental Capacity Forum, which was set up following the post-legislative scrutiny of the Mental Capacity Act precisely because of the problems with its implementation. I worked in that role all through Covid. As the noble Baroness, Lady Browning, said, unfortunately, although it is a fantastically good piece of legislation, its implementation depends on the person who is implementing it. Although there has been training, and we worked very hard to get training in, it has unfortunately not always improved things as much as one might hope.

The other thing I draw to your Lordships’ attention is Section 62 of the Mental Capacity Act, which concerns the scope of the Act. It says:

“For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961 (c. 60) (assisting suicide)”.


It was with that background that I became concerned that the quality of the information the person has depends on the knowledge of the person giving that information, as well as the ability of the person to retain it. I spoke about choice at the beginning of my speech. I am sorry that the noble Baroness, Lady Thornton, is not in her place, because choice is essential if we are giving patients opportunities to make decisions, but we have to have real choices. That is why I spoke about the black holes where there is no adequately provided palliative care.

Unfortunately, although the Bill has had a money resolution—forgive me if that is the wrong phrase, but there has been a commitment to fund the provision of a service if the Bill becomes an Act—it has not been matched by concurrent funding in the long term for specialist palliative care. That is a concern, but we will come back to it later.

There is another very small point that I want to make: can we please avoid using the term “commit suicide”? It is not a crime to take your own life, and “commit” is a deeply offensive term. We are talking about people who, for whatever reason, decide to take their own lives and end their lives early. We should remember that as we go forward in our debates, out of respect for everybody who has been bereaved by the tragedy of suicide or attempted suicide.

When it comes to life and death decisions, though, I suggest to the Committee that it is fundamentally different to have the decision of accepting that your disease process is going on, that your dying is inevitable and that you wish to withdraw your dialysis or ventilation. Those are decisions in which I have been involved with patients for decades. We can now take people off ventilators very gently and calmly without any of the distress that was previously associated with that, and they die of their underlying disease.

What we are talking about is suicide prevention versus suicide assistance and the point at which you decide, as a clinician with a patient in front of you, whether you are going to be working with suicide prevention, improving quality of life, or whether you are going to stop that because you are going down a different route, and some of the evidence we had was to that effect. However, because of time and the way that things have gone on, I beg leave to withdraw my amendment.

Amendment 2 withdrawn.