Terminally Ill Adults (End of Life) Bill

Debate between Baroness Butler-Sloss and Lord Bishop of Newcastle

Committee stage
Friday 6th February 2026 Lords Chamber

[Baroness Butler-Sloss (CB)]

My Lords, it is usually necessary to have a rather greater capacity to make a will than to get married, which may perhaps be rather surprising. I am concerned about two groups of people: those with intermittent dementia who from time to time appear to be entirely normal and then the next day cannot remember anything that has happened, and people who are sectioned under mental health legislation.

Some years ago there was a famous case about someone who was sectioned. It was intended, in his best interest, to amputate his leg, but he absolutely refused. He was allowed to have the capacity to make that refusal, and in the end it was not necessary to amputate his leg. Consequently, it is quite tricky to determine whether that group of people who have been sectioned under mental health legislation will be seen to have sufficient capacity under the Mental Capacity Act.

It would be extremely helpful if the noble and learned Lord, Lord Falconer, could provide us, before Report, with what he sees as the changes that might be achieved to give special status. If he does not do that, we will spend a lot of time, all over again, on an issue that probably could be dealt with fairly quickly.

[The Lord Bishop of Newcastle]

My Lords, I will speak to Amendment 108, to which the right reverend Prelate the Bishop of Lincoln has added his name. He regrets that he cannot be in his place today, as he is interested in this amendment as lead bishop for the L’Arche community in the UK. With the Church of England, L’Arche strives to provide a positive and inclusive residential community in which adults with and without learning disabilities can live and grow together.

Health inequalities come into focus for much of the Bill. As we heard in the Select Committee on the Bill, people with learning disabilities experience significant inequalities in health outcomes. The learning disabilities mortality review found that 40% of the deaths of individuals with learning disabilities in 2023 were linked to avoidable, treatable or preventable causes—double that of the general population. As we heard from Ken Ross on behalf of the National Down Syndrome Policy Group, people with Down syndrome are likely to die 27 years earlier than their peers. He highlighted

“a systemic direct and indirect bias shown within the health service, which could also be linked to a lack of understanding of the needs, wishes, health, learning and communication profiles of this particular group”.

That bias is linked to what other people feel a life worth living is like, sometimes pejoratively described as a life without dignity.

We have heard about the high suggestibility of some people with learning disabilities, and the discrimination they face both in and outside the healthcare system. This is closely linked to capacity. It is clear that additional protections are needed for this group, which is why due consideration should be paid to this amendment.

Terminally Ill Adults (End of Life) Bill

Debate between Baroness Butler-Sloss and Lord Bishop of Newcastle

Committee stage
Friday 30th January 2026 Lords Chamber

[Baroness Butler-Sloss (CB)]

My Lords, for the reasons given, mainly by the noble Lord, Lord Empey, and despite what the noble Baroness, Lady Gerada, has just said, it seems to me highly desirable that there should be face-to-face contact if such an enormously important decision is being made. I therefore support face-to-face contact at both stages, other than for reasons where it cannot happen.

[The Lord Bishop of Newcastle]

My Lords, taken together, the amendments in this group highlight the importance of contact with people at the hardest time in their lives—a time when we must be most vulnerable, clinically and personally. This must not be a process in which anyone is made to feel rushed or that can be completed entirely online.

If we are content to enable access to a slick service as quickly as possible, an online service may be acceptable, but if we are to continue to take seriously our duties of suicide prevention, of assessing and meeting unmet need and of safeguarding, the human contact of being face to face is part of that.

During the Select Committee sessions, we heard evidence from the chief executives of Mind and Standing Together Against Domestic Abuse, who said that an online or pre-recorded consultation was not an adequate safeguard to assess a person’s emotional state. This must be especially true in complex cases. I remind your Lordships that prisoners are still eligible under the Bill. As we engage with every group, we must consider how the particular issue might play out in a prison context. All the challenges that we are worried about, including the assessment of unmet need and the presence of an undiagnosed mental disorder, are more difficult in a prison environment. So I would be grateful if the noble and learned Lord, Lord Falconer, could outline whether he thinks in-person assessments should be even more important in a prison context.