Terminally Ill Adults (End of Life) Bill

Baroness Berridge Excerpts

Friday 5th December 2025 Lords Chamber

[The Lord Bishop of Leicester]

My Lords, I too rise to support this amendment with some caution, noting that these are deep waters. I hope that noble Lords will forgive me for pointing out the blindingly obvious: as I look around your Lordships’ Committee, I do not see any 18 to 25 year-olds on these Benches, and the voices of children and young people are vital in such a debate.

The role of Children’s Commissioner was created to ensure that the voices of children and young people were heard within your Lordships’ House and the other place. Therefore, when the Children’s Commissioner, whom I know personally, who has visited my diocese and whom I have seen at work listening to children and young people—she and her staff are superbly skilled at that work—urges us to be cautious, I believe we should listen. I therefore urge consideration of that note of caution.

[Baroness Berridge (Con)]

My Lords, I will speak to Amendment 4, in the name of the noble Baroness, Lady Berger, to which I added my name.

As well as this Bill, the Private Member’s Bill in the name of the noble and learned Lord has, as a requirement, the safeguard of a six-month prognosis. When one looks at this in relation to those over 18, I am interested in what pre-legislative scrutiny or consultation the noble and learned Lord, or the other Bill’s sponsor in the other place, had on the science. I am not a scientist, but I have a researcher who is a scientist, so I took advice on how to treat the science when one speaks in a debate with those who have great eminence, such as the noble Lord, Lord Winston. Having looked at that, I believe it is relevant to the age limit in the Bill. There will be specific types of vulnerability for certain groups of young people—as the noble Baroness, Lady Fox, outlined—but those will be discussed in later groups.

According to peer-reviewed studies—which, I am told, are the best way to begin to treat the science—the brain reaches its full size physically at the age of 14, but the neural circuitry does not develop to enable enhanced decision-making and cognitive function until the age of 25. I am also informed—I am sorry to disagree with my noble friend Lord Sandhurst—that the study that was quoted by the BBC is viewed as an outlier from the peer-reviewed studies that we have in this regard.

When looking at terminally ill adolescents—I am grateful to the noble Lady, Lady Hayter, for reminding us of that—we also need to consider that there are psychological reports that they may have an unrealised concept of the finality of death, which I think is relevant to what the noble Lord, Lord Moore, said. As the Children’s Commissioner stated in her letter of evidence to the Select Committee:

“Compelling arguments have … been made about the additional difficulties present in diagnosing young people in this age group, and predicting with certainty the chance of living for six months”.


Of course, if that is wrong, it could lead to an earlier, untimely death, if assisted dying is made available to them.

I was really intrigued by that statement and sought to look at the scientific evidence. I have found peer-reviewed papers, in particular one from the University of Manchester reporting historical data that finds that, even with advanced diseases such as thyroid cancer, this group has a better rate of survival than adults over the age of 25. The report outlines that that may be because a more efficacious response to treatment, as a younger body may be better able to receive it; it may be due to an elevated sense of hope, which is often reported in young adults; or it might be because such a devastating diagnosis at that age is hard to fathom, as it is not a disease they think would ever happen to them. That sense of hope possibly contributes to a positive impact on the immune system, thus resulting in a better response to the administered medication.

The second reason I outline is that—as the noble Lady, Lady Hollins, briefly alluded to—there is a significantly increasing life expectancy in terminally ill young adults due to the incredible advances that we are beginning to see in treatments such as advanced immune therapies and personalised genotype-directed treatment. Both have seen increased survival rates of up to five years in up to 80% of patients with terminal cancers. Although we will come to the matter of young people and the EHCP in a later group, I think it is right to reiterate that we have policies that treat those between 18 and 25 differently in certain situations.

The Children’s Commissioner also brought to our attention that young people already often fall into a gap at the ages of 16 and 17. Some community palliative care services end at 16, and then others do not begin at 18. That makes me wonder whether we need to think more about their access to specialist palliative care in this Bill in later groups.

Can the noble and learned Lord outline what process there was, before both Bills were put together, to look into the scientific evidence? It seems to me that the assumption in both Bills is that a six-month prognosis affects or applies to all groups of the population in the same way. Is that indeed the case? We know from evidence from the European Society for Medical Oncology’s Professor Stone that a six-month prognosis is inaccurate in over half of cases. Is six months the right level to use—that might be a connected change—or is 18 too young an age? I would be grateful to know whether the noble and learned Lord has already engaged with this science. Perhaps with the assistance of the noble Lord, Lord Winston, this, I think, would be a valuable way of looking at the evidence behind Amendment 4.

[Lord Weir of Ballyholme (DUP)]

My Lords, this is an important group of amendments, particularly to those of us who have an interest in young people. It is very important that we have heard today a range of opinions on where age eligibility should lie. When dealing with age eligibility in this Bill, it seems that there are three critical questions. First, at the lower end of eligibility, should there be an age limit below which it is impossible to access assisted dying? Secondly, if it is agreed that there should be an age limit, is 18 the appropriate age? Thirdly, as has been posed by the two sets of amendments in this group, if we feel that 18 is too young an age, what is the appropriate age that we should set?

On the first issue, I am glad to say that at least the proponents of this Bill have not gone down the line—as has been argued, I think, by some lobbyists and has been the case, for example, in Belgium and the Netherlands—that there should be no lower age limit. I welcome the fact that this seems to be accepted by the proponents of this Bill. However, I reiterate the question that has been asked—I look forward to the noble and learned Lord, Lord Falconer, summing up in relation to this—about what assurances we could have if we ended up in the position where the eligibility is at 18. What confidence could we have that that will be stuck to?

On the second issue of whether 18 is the appropriate level, I cannot claim any particular knowledge or expertise on neuroscience, but I have a lot of experience having served twice as Education Minister in Northern Ireland. I am sure that, if you speak to anyone who has served in that sort of role in any of the jurisdictions, they will say that the greatest privilege you have in that ministerial capacity is meeting young people on a day-to-day basis and talking to them about their lived experiences. It is a great joy to meet the many very healthy, confident young people who can look forward to a lifetime ahead of them. However, it is also the case that you come across a number of young people who are very vulnerable, who have extremely life-limiting conditions and who have a terminal illness.

In my experience, the families of those young people reorientate themselves through their love, so that the focus of almost all family activity is on that young person. The by-product of that, at times, can be that some of those young people feel themselves to be a burden on their family: that they are disrupting everything that their family does and not allowing their family to lead a normal life. They sometimes feel a sense of guilt.

While I am sure that we will come on to this in later stages, I note the concern about what might be described as “self-imposed coercion”: people coming to the conclusion that they will be doing a service to their loved ones by going down the route of assisted suicide. We know that concerns have been raised in relation to the disabled and the elderly feeling under a particular level of pressure, but it would be naive to believe that young people in that position do not also feel themselves to be pressurised. I do not want us to create a situation where a young person, in the run-up to their 18th birthday, asks, “How can I facilitate my family by taking that ultimate step?” So, on the issue of maturity, I contend that 18 is perhaps not the right boundary point in this case.

Finally, there are competing amendments about whether it should be 21 or 25. While I came to this in a fairly agnostic manner, I have been persuaded much more towards the position of the noble Baroness, Lady Berger. I am also persuaded in many ways by the words of the Children’s Commissioner. I have considerable experience of dealing with both the Children’s Commissioner in England and her opposite number in Northern Ireland, and I believe that the commissioners tend to have a particular worldview: when they look towards young people, they want the world to be permissive towards them. They are progressive in their nature—and sometimes, I have to confess, they may be a little too progressive on certain subjects for my own liking. But they always look, where possible, to extend rights to children that are normally given to adults. So, when we see a situation such as this, where a Children’s Commissioner is, in effect, saying, “Be very careful in relation to the law. Do not extend this to younger people between 18 and 25”, we need to pay cognisance to that.

--- Later in debate ---

[Lord Falconer of Thoroton (Lab)]

Just to clarify my position, I was responding to the debate which gave rise to real concerns about the age. I understood the noble Baronesses, Lady Cass and Lady Finlay, to say that perhaps a way forward would be to see whether there were additional safeguards from 18 to 25. That would involve me having a discussion with them and, if they were satisfied that there were additional safeguards and that they thought the age of 18 was right, that would obviously have an effect on me. If they put other arguments, I would obviously take them on board as well. My experience of the House is that, if one sees a way forward, before one continues making the same arguments as before, one sees whether a compromise that sensible Members of the House think would be enough works and whether it could attract support on Report. That was what I was thinking.

[Baroness Berridge (Con)]

May I draw the attention of the noble and learned Lord to the fact that the amendments I have laid in relation to EHCPs and additional assessment criteria are currently in group 7? If he has that meeting and that compromise might be available, that may enable me to withdraw some amendments.

[Lord Falconer of Thoroton (Lab)]

I very much welcome that suggestion. I also welcome the suggestion of the noble Lord, Lord Harper, who, as I understand it, is saying that we should also look at the clinical diagnosis of people. The noble Baroness, Lady Finlay, also raised that point. I am more than happy to include both those things, and if they both want to come, I would welcome them.

--- Later in debate ---

[Baroness Finlay of Llandaff (CB)]

My Lords, I have some questions for the noble and learned Lord, Lord Falconer, about his Amendment 6, because my concerns also relate to the amendment in the name of the noble Lord, Lord Moylan. It does not seem to reflect the way that seriously ill children behave.

I have looked after children dying of malignancies. They knew that they were dying and asked really straightforward questions. They would ask about how they would die and would want to have in-depth conversations. I recall one little boy who asked me if he could play football in heaven, after another little boy in an adjacent room had died a few weeks earlier. These children asked for explicit details and wanted to have lots of conversations. Another one said that he would die after his goldfish died. Sadly, that was prophetic and when he was close to death, he asked his divorced parents to come in and promise to look after his siblings together. These children know each other; they want to ask questions and need to have them answered.

I am not sure how, with Amendment 6, doctors are meant to respond to these children when they ask questions. At the moment, you respond gently and openly, and explore with them what they are really asking about in an age-appropriate way. I have a concern that this could make people feel risk-averse about having open communication with these children, and let children remain isolated with their fears. They hear about assisted dying on the news and in the media; the ethical aspects are part of the senior school curriculum in some areas. I am really concerned that Amendment 6, while well-intentioned, and the adjacent amendments, might actually make the day-to-day looking after of these children as they are dying more difficult.

Amendments 170 and 405 seem to lower the threshold for communication. I am grateful to the noble Baroness, Lady Coussins, for pointing out that whenever an interpreter is used they must be a registered public service interpreter, to avoid the poor communication scenario which I referred to last week. Speech and language therapists are essential, so can the noble and learned Lord, Lord Falconer, explain how with one would judge “effective”, as is listed in his amendment, and assess “reasonable steps”? These seem very subjective and I am not sure how they would be monitored. Others have spoken to the other amendments, so I look forward to hearing the comments from the noble and learned Lord.

[Baroness Berridge (Con)]

I will speak briefly to raise attention to Amendment 170, which has recently been added to the group. In an effort to short-circuit, we will come to the issues of interpreters much later on.

I have laid Amendment 174, which quite simply says that an interpreter must be over the age of 18. It will not surprise the noble Baroness, Lady Merron, that I have a whole cluster of amendments to deal with what may be inadvertent situations that are not covered off for under-18s. I invite the noble and learned Lord to look at that amendment to see whether it can swiftly be clarified and dealt with, along with the others that relate to children.

In this group, I will also speak to the noble and learned Lord’s Amendments 332, 417 to 419 and 425, which I believe are a genuine attempt to deal with the report from the Delegated Powers and Regulatory Reform Committee. It advised the sponsor of the Bill to remove the Clause 15 power and to align the other clauses, because there were inconsistent wordings. I want to reiterate that reassurance was given in the other place that there would be one second opinion by another doctor. This goes back to the noble and learned Lord’s opener: when we talk about “cannot”, we need to cover that off in the Bill. The Bill was covering death or illness—obvious situations where the function cannot be fulfilled—but “will not” is obviously a different scenario.

Unless the doctor is unable to perform that function, for whatever reason, if we do not stick to the word “cannot”, we will potentially get the opening up of the ability to choose a number of doctors and maybe having some kind of discussion. Then they may not want to act, which may be for the reasons outlined by the noble Baronesses, Lady O’Loan and Lady Goudie. Then we might have a number of assessments or discussions that do not become a formal refusal which is then documented. I do not think the noble and learned Lord intended, by changing Clauses 10 and 13, to broaden the scenarios where a further referral could be made to any situation in which the doctor is unable or unwilling to continue; I think this has happened inadvertently. I know that my noble friend Lord Harper has laid amendments regarding particular scenarios beyond “death” and “illness”, and I think that the Minister in the other place, Mr Kinnock, mentioned family circumstances or emergencies. Perhaps the way ahead here—I am trying to pre-empt a further group, when we get to it—is that we could have a clause that outlines more circumstances than the two that are in the Bill.

Obviously, as lawyers, we know we can never cover every circumstance that would justify a doctor saying, “I can’t do this function any more”, not “I won’t”. Perhaps there could be a system whereby a doctor who wants to withdraw, and his or her circumstances are not in the paragraphs, should have to go to the panel and say, “I’ve got a situation that isn’t within the framework of the legislation, but I can’t for these reasons perform that function”. So I hope the noble and learned Lord will not move those amendments, as he has promised, but we could come back to this in the group that deals substantively with exploring scenarios where the doctor cannot act.

[Lord Ashcombe (Con)]

My Lords, I wish to express my particular concern regarding Amendment 416. The question I must put to the noble and learned Lord is, why should an independent doctor tasked with providing a second opinion not have access to the notes of the first? Is the intention to prevent any influence on the second medical professional, even when the first has identified grounds for dissatisfaction and declined to proceed with the possibility of assisted death?

We have already engaged in lengthy debates on the crucial matters of decision-making capacity and the risks of coercion. What if the first independent doctor had uncovered evidence of precisely such concerns? This situation inevitably calls to mind the troubling prospect that a patient, or indeed another party exerting influence upon that patient, might seek out a doctor willing to endorse the view of the co-ordinating physician. Surely the medical notes generated throughout the process are of fundamental importance to all involved in the medical profession, and it cannot be right that they should be withheld from any participant in the decision-making claim. I therefore earnestly ask the noble and learned Lord to give me his thoughts on this, as I do not really consider this to be a straight drafting issue.