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.