Terminally Ill Adults (End of Life) Bill

Debate between Lord Blencathra and Baroness Hollins

Committee stage
Friday 20th March 2026 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I commend the introduction to this group by the noble Baroness, Lady Fraser. At the end of a person’s life, clear and honest communication really matters. When my husband was dying—he had motor neurone disease—he increasingly relied on AACs to communicate. This did indeed test everyone’s patience. People who are dying must be able to understand what is happening to them and what their options are, as well as being able to say what they want and need. But this works only if people understand, and that means that communication must be accessible.

I will focus my remarks on people with learning disabilities. Around one in six of the adult population struggles with literacy—not just people with learning disabilities. That is why the Bill should not just say that “reasonable steps” must be taken; it needs to be much stronger than that. It should say that they “must provide” adjustments, whether that is interpreters, simpler language or information in different formats. In the Equality Act, making reasonable adjustments is a legal duty, not a choice. It is about making sure that everyone is heard, understood and treated with dignity when it matters most.

Clause 39 requires a code of practice to address the provision of information and support to people with learning disabilities. Clause 40 requires the Secretary of State to issue guidance on the operation of the Act and to consult people with learning disabilities prior to issuing this guidance. I have not tabled amendments about this because I cannot think of any way to make this provision robust enough. For such consultation to be meaningful, it is necessary to understand more about how assisted dying could be explained and discussed with people with learning disabilities in a way that is accessible and non-coercive.

However, currently almost nothing is known about the views, understanding and perspectives of people with learning disabilities in relation to assisted dying. Understanding how they understand and make end-of-life decisions, and who or what may influence those decisions, is crucial. There are serious questions and concerns about influence that is far more complex than explicit individual coercion. People with learning disabilities often have very limited health literacy. Many have depended all their lives on others when making decisions about their health and social care. The mere fact of someone explaining the option of assisted dying may be perceived as an endorsement of assisted dying, especially if it is someone in authority, such as a doctor, nurse or care home manager. It is true that there is now mandatory training in learning disability and autism for all health and care professionals, but this is very basic training and does not include supervised communication practice.

I have discussed these issues with Irene Tuffrey-Wijne, who is professor of intellectual disability and palliative care at Kingston University. I declare an interest as the founder and chair of the visual literacy charity Books Beyond Words, which created a word-free picture book called Am I Going to Die? The word-free narrative was co-authored by me and Professor Tuffrey-Wijne and was informed by the professor’s doctoral research, which I supervised, about the experience of death and dying of people with learning disabilities. Noble Lords may be interested to hear that a pilot study has just started at Kingston University, in collaboration with the Down’s Syndrome Research Foundation and Mencap, to explore assisted dying and end-of-life choices with people with learning disabilities. We need to wait for the results of studies such as this before concluding whether it is possible to extend the provisions of the Bill to people with learning disabilities at all.

[Lord Blencathra (Con)]

My Lords, I rise to support the amendments in this group but first, if the Committee will permit me, I turn to face my noble friend Lady Nicholson of Winterbourne. She is absolutely right to criticise the lack of facilities for deaf people in this Chamber. Older parliamentarians may remember the wonderful Labour MP Jack Ashley, who was profoundly and totally deaf. Even 30 years ago, the House of Commons was able to produce some gadget for him so that he could follow proceedings. That was before the digital era. Surely, in the name of God, it is possible now to produce some gadget so that my noble friend and others who may be profoundly deaf can read the lips of all those of us who are speaking in this Chamber.

Terminally Ill Adults (End of Life) Bill

Debate between Lord Blencathra and Baroness Hollins

Thursday 8th January 2026 Lords Chamber

[Lord Blencathra (Con)]

My Lords, I agree with the noble Lord, Lord Carlile. I agree that we could complete the Bill in the time allocated if we got a firm steer from the noble and learned Lord, Lord Falconer, about what he intends to do with the amendments we have already discussed. The closest we came to a steer from him was in our last session, discussing 18, 21 and 25 year-olds, when he said he would go away and think about possibly adding new tests to make it more certain that 18 year-olds had made the right decision on whether they should opt to die or not.

I have sat through all the debates here and I stand to be corrected, but I do not think the noble and learned Lord has agreed to accept in principle any of the other amendments that have been tabled. He gives the impression, rightly or wrongly, that he intends to defend every word in the Bill, line by line, and not produce reasoned amendments for Report. If he were to do that, I suspect we could make a great deal more progress.

I conclude by saying that, tomorrow, we will be discussing major amendments on palliative care, and many of them are quite different. If the noble and learned Lord were to stand up early on and say, “I like the principles of Amendments X, Y and Z, and I promise to go away and come back on Report with a better version of them”, I suspect we would make rapid progress. So it is in the noble and learned Lord’s hands to get this done in the next 10 days, and he should not blame those who are willing to talk about amendments which he gives the impression he would never accept in a month of Sundays.

[Baroness Hollins (CB)]

My Lords, I agree with the noble Lord who has just spoken. I also support the idea of the noble and learned Lord, Lord Falconer, that the Bill needs more time for scrutiny than is available through the usual tried and tested Private Member’s Bill process. We have to manage expectations, though, and I have been thinking about precedents for a Bill of this complexity. With the help of the House of Lords Library, I have been looking at balloted Private Members’ Bills from the House of Commons ballot that reached First Reading in this House in the 10 years from the start of the 2015 Session. It is very interesting.

In the other place, of course, ballot Bills are introduced by title only, with the full text appearing or changing at later stages. But the full text version as brought from the Commons provides a consistent and analytically robust basis for comparison. The average length of the Bills in that 10-year period was 8.8 pages, with a mean of five clauses. In contrast, this complex Bill, heralding major social and societal changes, has 51 pages, with 59 clauses. So it is hardly surprising that it needs lengthy scrutiny.

Eight of these pages were actually added by the sponsor on Report, with little or no discussion. In the other place, 92% of the amendments tabled by Members other than the sponsor were not even debated, and just seven were put to MPs for decision. This data refutes the misleading impression being given in the national media, which suggests that your Lordships’ House is delaying progress by tabling and debating amendments, as in reality they are needed to improve the safety and care of patients.

I suggest that counting the number of amendments is misleading, because many are consequential on the change proposed. As my noble friend Lord Carlile suggested, there are about 10 major issues. The noble and learned Lord has not said which amendments, if any, even those recommended by the royal colleges and patient advocacy groups, he is willing to accept. Members are waiting for his active engagement and for a bit of give and take.

In the past 10 years, only 66—about a third—of all balloted Private Members’ Bills have become law. Of these successful Bills, the vast majority were government handouts or had explicit government support. Nobody can argue against scrutiny, and I am glad that the noble and learned Lord has recognised that a Bill of this length and complexity does not fit the usual model of a Private Member’s Bill. I have concluded that the kindest thing for the Government to do would be to seek to establish a royal commission to give this weighty issue the attention that it deserves. We cannot do it justice through the Private Members’ Bill process, but I agree that it needs time.