Terminally Ill Adults (End of Life) Bill

Baroness Freeman of Steventon Excerpts

Friday 27th February 2026 Lords Chamber

I look forward to the Bill’s sponsor answering those queries. I am sure he will do so in a very kind, elegant and eloquent manner. I do not necessarily have a great deal of hope that he will adopt the amendments, but I look forward nevertheless to hearing his conclusions on my remarks.

[Baroness Freeman of Steventon (CB)]

My Lords, I will introduce Amendment 144A in my name. It is related to my other Amendments 726A and 728A, which are grouped much later and to which I do not expect to speak. I draw attention to my registered interests.

When I was at the Winton Centre in Cambridge, I led a team that produced information for patients in the NHS, and I am still involved with that. That experience underscores Amendment 144A, which has the support of the BMA. It would make the assisted dying commissioner responsible for the provision of the personalised and balanced information that patients require when making their end-of-life decisions under the Act. I know how much is involved in producing that information, how carefully it needs to be done and how controversial it can be. It therefore needs to be properly resourced, and the lines of responsibility for it must be clear.

We have already had discussion about informed consent. I think we all agree that, during the process outlined in the Bill, people need to go through the process of consent, but they also need to go through the process of shared decision-making, which is different. For both shared decision-making and consent, eligible people need to be given the risks and benefits of the different options open to them—including of doing nothing. That information has to be as personalised to each patient as possible, and presented in a way that is understandable to them. It is rightly the responsibility of the doctors to give that information to patients and to check their understanding of it through talking with them, but where do the doctors get that information?

Increasingly, healthcare professionals are provided with tools to help them. Online risk calculators help to personalise information on prognoses or the chances of an event for a patient such as the one they are talking to at that moment. Decision aids bring together all the current known evidence on side-effects, represented in easily understood ways, and patients can take these away and refer back to them while considering their decision. To give an example, for benign enlarged prostate there are two main classes of medicines and at least eight different types of surgery available to patients. I do not think a single individual doctor would know the numbers for the average effectiveness and for each of the major side-effects for every one of those 10 options. Each specialist would know the figures for two or three of the options that they offered or were familiar with: enough to consent their patients for their favoured option but not enough to help the patient make an informed choice from all the options available. To do that, they need a decision support tool which has all that information, but also more than that. That is why these sorts of decision aids are needed—and I want to give the House a sense of what is involved in making them, because it is important to understanding this amendment.

When we make decision aids, we work hand-in-hand with patients and members of the public, with people with visual and learning disabilities and neurodiversity, and conduct academic research into how people interpret numbers and graphics representing them. I mentioned that the needs for informed consent and shared decision-making are different. What we find when we work with people is that, when making a decision, people weigh up a much broader range of pros and cons than simply risk and benefit numbers. The information they want is not just a percentage risk, which would tend to be what doctors would be able to tell them when doing informed consent; it is also information about how to access different options, including those available outside the NHS. They want to know what would or might happen, including what a certain test actually involves and why it is done. They want to know where things would happen. They need to know what their rights and options are about things such as their right to say no to something or to have someone else with them. They want prompts for questions that they might want to ask or consider asking, and spaces to write notes for themselves to be passed on, so they do not have to repeat themselves at every appointment. All these things in one place help people who are not feeling at their best to navigate an unfamiliar medical world and have more confidence that the decisions that they are making are the best ones for them. We know from working with patients and getting their feedback that this is the sort of information that terminally ill people will need to support them making decisions around their end of life.

I describe all this to illustrate that this information needs to be very carefully put together, and I know that it takes time. It takes about a year or so to do all the background research, design and test with a range of real patients and relatives—and possibly longer in this case, because it will need to be quite personalised and kept up to date because of the geographical variations and provisions of different options provided by different providers, such as those you find in palliative care. Of course, that time and that team doing that work will need to be funded, and the final versions will need to be approved and then kept constantly up to date. That is why I have proposed Amendment 144A, to ensure that this very important job is overseen by the assisted dying commissioner; with their legal background and the current job description in the Bill, they should have the means to request the right amount of resourcing from the Government to make sure that this information is produced to the right standard and well maintained.

I do not think anyone in this Chamber or outside would disagree that having balanced, personalised information about options in a suitable format for everybody, whatever their disabilities, is critical to this Bill—and I do not think that anyone will, having heard what that takes, underestimate the amount of work that it will entail. There will be a lot of people who might want to persuade patients rather than inform them around this decision, which makes it particularly important that official information is produced carefully, overseen and kept up to date. Currently in this Bill, it is not entirely clear whose responsibility this commissioning of information provision would be. When we make them, we are commissioned by a team within NHS England, but it does not just spontaneously happen, even within the NHS. It is unclear to me whose responsibility it will be when NHS England disbands, for example, and an assisted dying service may be outside the NHS. That is why it is important that this Bill specifically assigns this critical responsibility, and the best person—the only person with the specific ability to ensure funds—appears to be the proposed assisted dying commissioner.

[Lord Moylan (Con)]

My Lords, I rise to speak briefly to my Amendment 134, which is a probing amendment. The noble Lord, Lord Weir, drew our attention to Clause 4(4), which sets out what he referred to as the functions of the assisted dying commissioner. In fact, the text refers to the “principal functions”, and my amendment suggests replacing the word “principal” with “sole”. Those functions are very extensive; they are elaborated in, among other places, Schedules 1 and 2 and Clauses 16, 18 and 49. They are, as I say, very extensive. They include in Schedule 1 a general power to do anything which may be necessary or appropriate for the commissioner to do in order to be able to carry out his functions. He is not short of responsibilities and he is not short of powers to be able to carry them out, yet in the Bill these are described as his “principal” functions.

So my first question to the noble and learned Lord is: are there are any other functions? Would anything be lost by changing the word “principal” to “sole”? Does he consider that there are secondary functions that the assisted dying commissioner has? Many of us are concerned that the voluntary assisted dying commissioner could easily become an advocate for change to the framework that we are establishing in the Bill. In particular, it may be found that some requirements set out in the Bill are irksome and difficult and take time. Of course, that is quite deliberate. The noble and learned Lord has set up a structure that is not meant to be easy to navigate, quite deliberately. This is not an easy structure to navigate and it may well be that, when the assisted dying commissioner comes out with his annual report—because he has to produce annual accounts, and I am sure that the report will contain things over and above purely financial figures—he will suggest changes and relaxations, and so forth. He cannot make those changes and relaxations, mostly, on his own—but we do not want, if we establish this Bill, to which many of us are strongly opposed, an officially paid and highly regarded advocate for the relaxation of the safeguards that we have built in to be operating out there.

So I come back to the question: first of all, does the noble and learned Lord want to say whether he considers there are other functions over and above those set out in the Bill, taking account of the general power I have already mentioned? Secondly, will he give us some assurance that he does not see this role as being that of an advocate for relaxation or change?

--- Later in debate ---

[Lord Falconer of Thoroton (Lab)]

The nature of the appointment is that it is an appointment by the Prime Minister. He is politically accountable for the appointment. The assisted dying commissioner, like so many other appointments made by a Minister, has legal duties, but, if you are looking for political accountability, it is the person who is responsible for his or her appointment. That is the way that public appointments operate.

[Baroness Freeman of Steventon (CB)]

I am sorry, but the noble and learned Lord has not addressed Amendment 144A.

[Lord Falconer of Thoroton (Lab)]

I apologise. The noble Baroness, Lady Freeman, emphasised in her Amendment 144A the importance of providing impersonalised information and assistance in relation to reaching a structured decision. She speaks from considerable experience, and I express my gratitude to her for talking to me about it and providing me with real assistance.

That would have to be dealt with by codes of practice issued by the Secretary of State under Clause 39. If there were problems—for example, the codes of practice were thought not to be adequate or were giving rise to problems—it would be for the assisted dying commissioner, under Clause 49(1), to report or indicate that something was wrong. The points the noble Baroness makes are important and I apologise for not dealing with them.