Terminally Ill Adults (End of Life) Bill

Baroness Berridge Excerpts

Friday 20th March 2026 Lords Chamber

[Lord Shinkwin (Con) [V]]

My Lords, I shall speak to Amendment 167 in the name of my noble friend Lady Fraser of Craigmaddie. In doing so, I should make it clear that I support the other amendments in this group, and I join other noble Lords in saying how good it is to see my noble and learned friend Lady Prentis of Banbury back in her place.

My noble friend Lady Fraser outlined how comprehension and communication can be a real challenge for some people because of their disability. The amendment invites us to think differently—to view the need for clarity from their perspective, not ours. That means our accepting that what may appear to many to be an unnecessary clarification will, to others, be essential.

Whatever position one takes on either the principle of assisted dying or indeed the Bill, surely the case for making the language in the Bill as clear as possible, for both the many and the few, is overwhelming. Doing so is ultimately about meeting the anticipatory duty to make a reasonable adjustment on account of disability. It was your Lordships’ House which helped to write that duty into law when it passed the Disability Discrimination Acts of 1995 and 2005 and the Equality Act 2010. Amendment 167 therefore gives us an important opportunity to show that we, as a law-making body, honour the duty to make reasonable adjustments, just as we require by law others to abide by that duty.

I hope the noble and learned Lord will recognise our responsibility to be seen to lead by example and to ensure that the wording of the Bill is in keeping with that duty, clearly and unambiguously. I hope he will consider my noble friend’s remarks very carefully, because she speaks with considerable professional experience and authority, which should not be ignored. I hope that he will accept her amendment.

[Baroness Berridge (Con)]

My Lords, Amendment 174 is in my name, and I am grateful to the noble and learned Lord for the meeting on this issue. This amendment states:

“Any interpreter provided under subsection (4) must be aged 18 … or over”.


It is a probing amendment.

If you put two lawyers in a room and give them wording from the NHS guidance saying that it is “inappropriate” to use children, you would have a fascinating discussion about discretionary versus mandatory, and that is the point behind this amendment. It might be that a different age, say 16, is appropriate, but since meeting with the noble and learned Lord, I have looked at certain guidance from particular NHS hospital trusts. Leicestershire Partnership NHS Trust states that you “must not” use children. The Milton Keynes University Hospital trust says that children “should not” be used as interpreters. So we have overall NHS guidance using the word “inappropriate”, which seems to imply discretion, but then we have certain hospitals—I obviously have not checked them all—using mandatory language. It is important that we consider whether, in this scenario, there should be any discretion to use children, whether they are under 18 or, as I say, under 16.

The TIA process should be mandatory, because it is a substantial process. This is the communication of a profound state of affairs. It includes numerous complicated stages, from a preliminary discussion to different co-ordinating doctors. It involves a Mental Capacity Act assessment and could involve the discussion of quite sensitive information about the administration of lethal substances and their potential complications. It is a serious and, as we have said, irrevocable decision.

My submission to the Minister is that it should not be an option that interpreting lies in the hands of a child, but that we should provide for qualified, skilled adults to be present and to provide that service, so that any relative, including children, can sit, support and have their own potential needs met. Is the noble and learned Lord satisfied that this should be a service provided by the National Register of Public Service Interpreters?

This is not a small problem. The census in 2021 shows that around 7.1% of people in the UK speak English as a second language and around 5% do not speak English well at all. The NHS website states that there are 1 million people who do not speak English well at all, who will need assistance with communication. If we do not provide this within the Bill, it might be that relatives, particularly children, are used in situations where the interpretation services are underfunded in that area—it is local commissioning that provides interpretation services.

I acknowledge that noble Lords may want the lower limit of 16, which some hospitals use, but I find it interesting to note that the limit may in the past have been too low. The former Member of the other place, Sajid Javid, talked about this. He said of his mum:

“I used to go to the doctor’s surgery with her—not because I was ill, but because I had to interpret for her. I was six or seven and an interpreter”.


I believe we should make sure that children in our jurisdiction are not placed in that situation.

From the evidence that was given to the Commons Public Bill Committee by Dr Jamilla Hussain, who is a palliative care specialist, we know that this issue disproportionately affects ethnic-minority communities, though not solely, of course. There are numerous reports of poor communication and interpretation that lead to adverse health effects and life-threatening illnesses being more prevalent in those communities. It would be the safest way possible if we put something mandatory into the Bill that does not allow for the possibility of situations where a young person feels they cannot say something, having been alongside their parent or guardian for many years. Putting something mandatory can actually protect those young people.

In relation to other clauses in the Bill, we have spoken about the profound effect on young people’s brains and development—I believe this is relevant and not repetition—of traumatic events such as the death of a close family member. That casts a new light on the possible neurological impact that interpretation by a child for a relative seeking assisted dying could have; it could give rise to further health conditions as they develop. Reports state that, if a child’s hypothalamic-pituitary-adrenal axis is faced with traumatic stress—in this instance the loss of the primary carer—it can lead to long-term functional and structural changes in key areas of the brain’s development. This can contribute to various psychopathologies, obviously including PTSD. Putting something mandatory into the Bill, so that children cannot be placed in this situation, is important to make it clear for all NHS hospitals which may have to deliver this.

It goes to a conceptual point, raised when I met the noble and learned Lord, about autonomy and choice. There are circumstances in which we limit autonomy and choice, particularly with children; we say that it is better for us all, as the legislature, to have taken a decision to protect those children. It should be mandatory that those under the age of 16 in this context are not taking part in the process of interpretation. It may be that, as we discuss this, there are situations and circumstances, such as terminal illness and advice about treatment, where it should be mandated that children are not involved as interpreters.

[Baroness Nicholson of Winterbourne (Con)]

My Lords, I will speak in support of my own Amendment 171, where I am suggesting that there is an adjustment to insert “hearing or visual impairments”. I declare an interest on both. First, I am a vice-president of Mary Hare School for deaf children, which is one of the world’s most wonderful schools for deaf children, not just in the United Kingdom but internationally; I have been a vice-president for a very long time, as were my parents before me. I do not speak on its behalf. Secondly, my other interest is that I recall my darling mother, who was completely deaf, completely blind and 100% paralysed for 13 months before she died, because of an unfortunate slip-up in an operation. It was, I am afraid, just one of those things. I therefore understand the needs of looking after someone who is 100% disabled, fully blind and fully deaf.

--- Later in debate ---

[Lord Falconer of Thoroton (Lab)]

I am very grateful to the noble Baronesses, Lady Hollins and Lady Nicholson of Winterbourne, for sharing their experiences with us—in the case of the noble Baroness, Lady Nicholson of Winterbourne, the death of her mother and the circumstances of her mother’s life; and in their case of the noble Baroness, Lady Hollins, the circumstances of her husband’s later illness.

These amendments concern ensuring that people with communication difficulties, hearing difficulties or particular cultural pressures are properly able to access assisted death, but also, very much picking up the words of the noble Earl, Lord Effingham, that they should have an assisted death only if it is crystal clear they have understood everything and it is informed consent. I pay tribute to the noble Baroness, Lady Fraser of Craigmaddie, for the intelligent and sensible way she introduced the amendments. I underline that I think everybody in the Committee would be of the view that the two aims are no discrimination and absolute clarity that somebody has agreed. That is the basis upon which I, as a sponsor of the Bill, approach this matter.

I shall deal first with what the current Bill and my amendments make provision for. Clause 5 states:

“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters”.


We take the view that that clause is inadequate because the assurance is not in the communication—by which I mean that you have to ensure there is effective communication, not that you have to ensure there are reasonable adjustments, because who knows whether the reasonable adjustments would work. For that reason, we have tabled Amendment 170 to change the wording in that clause and the parallel clause, Clause 10, to

“take all reasonable steps to ensure that there is effective communication”.

I am sure that is the right way to do it. The focus should be not on ensuring they have to take the steps but on effective communication. I emphasise that because the noble Baroness, Lady Fraser, said those amendments would make it less safe. They would not: they would make it safer. I hope that, having heard what I have to say, the noble Baroness will see that I am trying to achieve what she, quite rightly, is trying to achieve.

The second method by which the noble Baroness rightly seeks to identify how one improves this is ensuring that there is an independent advocate or somebody who has the ability to deal with the communication difficulties of the sort she proposes. That is in her Amendment 546, which would ensure that you are entitled to an independent advocate if you have communication or speech difficulties.

I hope the noble Baroness will be persuaded if she looks at my Amendment 548A, which sets out in detail, by amendment, the circumstances in which an independent advocate has to be made available. I am sorry to go through this at speed, but I have no other options. Who is entitled to an independent advocate? In proposed new subsection (8)(b), it is a person who

“would experience substantial difficulty in … communicating their views, wishes or feelings (whether by talking, using sign language or any other means)”.

So we have sought to do the same thing as her Amendment 546 proposes. I do not invite her to agree or not at the moment, but I very much hope that she looks at that and that she agrees that we are all trying to get to the same end. I completely accept how she framed the issue around people who have the sort of communication differences that she and the noble Lord, Lord Moore of Etchingham, referred to. I am sad not to see him in his place, but no doubt somebody will tell him—he dealt with exactly that sort of issue. So I am with the noble Baroness on this, and I hope she will be satisfied that I have dealt adequately with the position.

On Clause 5, the noble Baroness, Lady Nicholson of Winterbourne, said: make sure that there is an interpreter and, she would add, an amanuensis. I hope she will take the opportunity of looking at my Amendment 548A and see that it would cover people who are deaf. But, again, if she is not satisfied with that, I would be more than happy to meet her—but I hope she will be satisfied with that. That deals with people with communication and hearing difficulties.

I turn to people who are under cultural pressures, religious pressures or pressures from their sexual identity. I completely understand this because I have had the benefit of conversations with the noble Baroness, Lady Nicholson of Winterbourne, who put to me the following example: a woman who is of a religion that would tell you that you would suffer in hell for ever after if you were to have an assisted death, but who is having one because she is being pressured by a man whom she is used to taking orders from, in effect. The question is not whether one makes special provision for that but whether our five layers of safeguard provide protection against that. I believe that having one doctor, a second doctor, the first doctor looking at it again, the panel and the first doctor looking at it again will identify those cases. So I understand what the noble Baroness says and I hope that, with the safeguard provisions that we have put in, we have covered that.

The final group is the one from the noble Baroness, Lady Grey-Thompson. She wants amendments that say that the report the first assessing doctor has to give should be in a language and format that is accessible to the person getting it. I completely agree. The clause makes provision for the Secretary of State to make regulations about all those matters, including that, and I would expect those regulations to deal with that.

[Baroness Berridge (Con)]

The noble and learned Lord has not covered my point.

[Lord Falconer of Thoroton (Lab)]

In relation to the point from the noble Baroness, Lady Berridge, that there should be an absolute exclusion on interpreters under 18, she makes the point that in a case involving, for example, a person under 18 who is the child of somebody going through an assisted death, it would be wholly inappropriate for them to have to deal with that. Again, I do not think we should provide for that in the Bill. It should be dealt with by code of practice. I can envisage circumstances in which somebody who is terminally ill and who does not speak English is comfortable only with their 17 year-old child being the interpreter, so I would be not in favour of an absolute exclusion in those circumstances.

[Baroness Berridge (Con)]

To clarify, is the noble and learned Lord saying that a mandatory exclusion would be in a code of practice? We cannot do that unless it is in the Bill. In relation to the latter point, we will just have to agree to differ on the safeguarding issues in relation to a 17 year-old, but would he be agreeable to 16 being the cut-off and mandatory?

[Lord Falconer of Thoroton (Lab)]

I am not in favour of a mandatory bar on any young person. I expect it to be dealt with in a code of practice. I agree that unless there is a mandatory provision in the Bill it will not be effective, but I am not in favour of that mandatory ban.