Chamber and committees

That issue has been a really interesting element of the debate. As you will be aware, I have opted to place this very much within the framework of health and care services, because I think that that would be the most effective way of ensuring safeguards and a more effective and efficient way of delivering the service. The pathway for the patient needs to be as seamless as possible, with an assisted death being one of a series of end-of-life options.

One of the safeguards that is built into the process is the discussion that needs to take place between the co-ordinating physician and the patient to ensure that the patient is aware of all the options that are available—palliative care, social care or other types of health and care treatments—so that the decision is informed.

Things may change over time—as the committee has heard, prognoses are highly problematic, and more so in relation to some conditions than others. That is one of the reasons why I have not set a six-month timeframe, which is a feature in other jurisdictions. Things may change over time, and there may be an on-going conversation, but I think that it is safest for all concerned if this is embedded in the health and care service.

I find the idea of a stand-alone service problematic. Expecting somebody to be lifted and shifted out of a current pathway into another service at what is probably one of the most vulnerable points of their life—their final days—does not seem acceptable. I am perhaps more sympathetic to the notion of opt-in and opt-out, but I would need to understand how that would work in practice and how to avoid creating unnecessary obstacles to people accessing the option.

As for the numbers involved, the appropriate training would need to be given to people to carry out the work. As we see from other jurisdictions—I refer to evidence that I gave to the Finance and Public Administration Committee—the number of registered medics is around 400 in Victoria and Queensland. The number of people in Victoria who were actively involved in 2023-24 was around 300; in Queensland, the figure was around half that—about 120. The numbers are not terribly high.

There would be a wider expectation that training would be required of those who might not be as directly involved, but who would need to be aware of what the law is and of how they might signpost somebody who asked them for advice. Indeed, some people might want to do the training for their own peace of mind, so that they understand the legal provisions. There is a training requirement, but the number of patients involved is likely to be very small, certainly in the first couple of years; it will gradually increase as public awareness increases, as medic confidence increases and as medics get the training that they need in order to deliver the option.

I do not see any reason why, in Scotland, we would find difficulties with our capacity to deliver this option that have not been experienced in any of the other jurisdictions concerned, including those in Australia, New Zealand and the US, which operate a similar model.

As you will be aware, the schedules to the bill are, in effect, the forms for this and other aspects of the reporting requirements. It is important that death certificates reflect the underlying progressive advanced terminal illness that gave rise to the application, as well as the fact that medication had been administered to allow for an assisted death. For clarity and transparency, both those things need to be captured, which is what the schedules to the bill set out.

From my initial discussions with the chief medical officer, I recognise the legitimate concern that there may be some sensitivity about the way in which the information is expressed and the distinction between suicide and assisted dying, which goes back to an earlier point. The chief medical officer and his colleagues helpfully suggested that codes are used for registrations that may allow for that information to be captured in a way that respects and acknowledges the sensitivity of what we are discussing.

I am keen to explore that further, but it is important that we understand who is accessing the option of assisted death, what conditions are involved, when people are accessing it and their sociodemographic characteristics. We need as much information as possible—anonymised, of course. As we might touch on later, it will be crucial to report on and understand the picture of how the legislation is working in practice. There are the annual reports, which will feed into the five-year review that is also set out in the bill.

If we look at other jurisdictions, we see that there are a lot of similarities in who is accessing assisted dying, the reasons why they are doing so and the demographic profile, but to my mind it is absolutely essential that we gather information in Scotland. In fact, the only element of my proposals that changed between the initial consultation and when I brought the bill to Parliament was in respect of tightening up the data-reporting requirements that were envisaged. For public confidence, and for the confidence of patients and medics, the more robust those requirements are, the better.

The fact is that there are two practitioners, acting independently of each other, making the assessment of both terminal illness and capacity, and they will have the option, where it is felt to be necessary, to refer to a specialist in relation to either the terminal illness and/or the person’s capacity. Those safeguards go well beyond the safeguards that are in place for many, if not all, other treatments that are available to patients.

Ultimately, whether or not we agree with the choice that an individual makes, if they meet the eligibility criteria, it would be unreasonable to deny them the opportunity to make that choice and activate the provisions that are set out in the bill.

I am highly delighted that you have asked me that question. With regard to the finance committee’s letter to you, the thing that confused me a bit was the weight that was attached to the suggestion that Canada would be a more appropriate model. The point was certainly raised by one or two of those who gave evidence, but even cursory scrutiny of the different models in place in Canada, as compared to those in Oregon and Victoria, would give you a pretty definitive answer as to why Oregon and Victoria were used.

I used both of those places because they used the terminal illness and mental capacity model, which was adopted in Oregon in 1996-97 and then more recently in Victoria, as the first of the Australian states. That means that we have probably the largest data sets on who is accessing the choice—and when, how, and so on—and we do not have to rely on an understanding of other demographic factors, or on whatever may be at play in the US, but not in Australia. Therefore, I think that it was a good comparator. No two assisted dying laws anywhere in the world are the same, but those two laws reflected the models that are most closely aligned to the bill that I have introduced and they give us the largest data set.

The eligibility criteria in Canada are far more extensive than the eligibility criteria in my bill, so it is difficult to see why you would use that as a model to understand who would access assisted dying and how, were it to be introduced in this country. I was slightly confused—not by the fact that that has been raised by witnesses but by the fact that the finance committee appeared to attach more weight to it than I think was justified.

The evidence that the committee heard from Australia was very telling. There have not been examples of problems.

It is worth pointing out—the medics on the committee will understand this far better than I do—that the act of dying can involve quite distressing implications for the patient and for those family members who might be supporting them. We need to be cognisant of that in understanding how an assisted death would work.

The evidence from the witnesses in Australia was telling, as I said. There are historical reasons in the US for why issues might have arisen there—certainly in the early stages—around the regulation of medications and what could be used. As far as I can see, issues with access to those medications now appear to have been addressed. The more relevant evidence from more recent years comes from Australia, where there do not appear to be problems. Dr Ward might want to add to that.

Thank you very much for that question. The issue has probably come up with most of the panels that the committee has heard from.

I am reassured that medics make capacity assessments routinely in relation to a swathe of different treatments and care options. Almost certainly, additional training will be required to make a capacity assessment in the context of an assisted dying process, but I would see that as augmenting or adapting the training that registered medical professionals routinely undertake.

As expertise builds up, we will need to look at support for medical professionals who are involved in the process—both peer support through the sharing of information, understanding and so on, and pastoral support. In speaking to those who are involved in the process in places such as Australia and the US, I note that they often point to the process as being one of the most fulfilling aspects of medicine that they have been involved in. However, it may well be challenging for others, so the need for that wider support element is almost inevitable.

Medics make capacity assessments routinely, and although further training will be required in terms of the specifics of the bill, I do not see that as adding greatly to the workload of, or the pressure on, the medics who would be involved.

Again, that is an interesting point. An awful lot of work is going on in that area, not least in relation to the Scott review. The bill is framed very much in the context of where things stand at the moment. The assessment is a capacity assessment in the context of the decision around an assisted death. Where additional support might be needed—and taking into account Dr Ward’s earlier comments—that can be provided, but capacity would still need to be established around the decision to opt for an assisted death.

As I said in my opening remarks, the personal testimony of people with a terminal illness or who have lost somebody to what could broadly be described as a bad death has stood out to me. I went through the process with the earlier bills in 2010 and 2015, and that testimony has come through far more prominently as part of the process for my bill than was the case previously. More and more people have that personal experience.

I remember sitting in this committee room listening to somebody from the Australian state of Victoria talk about his experience after being diagnosed with myeloma. He talked very warmly about the quality of the treatment and palliative care that he was in receipt of, but he said:

“During my time in hospital, I got a taste of what would be in store for me as my blood cancer progressed to terminal. It was horrifying—something that no human being should have to endure.”

I was also contacted by somebody from the Western Isles with MND, which was touched on earlier. They said:

“I’m not afraid to die. I want to live. I want my life to continue. But right now, I am living with extreme anxiety and suffering. For me, assisted dying is, funnily enough, a lifeline. I could let go of sleepless nights, stressful days and constant anxiety-ridden thoughts.”

I have sat on the other side of the table, and this is one of those occasions when you need to make a judgment about whether the change that would be introduced would make things better. At the very least, you want to avoid making things worse. With this bill, the status quo has consequences—if we do not introduce this choice, we will be accepting that those individuals and others will continue to face hellish options at the end of their life, despite the best endeavours of palliative care and despite any investment that we might wish to make in improving access to palliative care. That seems intolerable to me. Those voices need to be at the centre of the debate that we are having on the issue and must inform the decisions that we take.

As I said, the number of those who are likely to take up the option of assisted death in the initial years is likely to be fairly low—we have certainly seen that pattern in other jurisdictions. The information that we have on who accesses it, when and how and so on, will, therefore, be more limited than one would expect in later years. However, it is important that we capture information from the get-go, so the annual reporting requirements will kick in for year 1 to ensure that the Government and relevant bodies, and the Parliament, understand what is happening.

I know that some concerns have been expressed as to whether a five-year review is too far down the line; some argue that a three-year review may be more appropriate. There is a balance to be struck in that regard. I understand why there may be a desire to ensure that any changes that might be needed can be taken account of as quickly as possible. However, if we do not have a detailed data set on which to draw, we, as parliamentarians, will find it more difficult to make a decision, informed by those in the field, about how the legislation is working and whether and where amendments might be required.

A five-year review seems to me to strike the right balance in order to give us the data set while ensuring that there is an annual reporting system in place that can pick up things in real time.

It would certainly be an option for the Scottish Government to add additional requirements on data gathering. I have sought to set out the data that, on the face of it, looks to be the most relevant, and what I have set out certainly reflects what the data-gathering processes look like in other jurisdictions. However, if the Government or stakeholders that are informing the Government feel that other elements need to be added, there is a mechanism for doing that.

As with any data gathering, there needs to be an understanding of why something is being added to the list. Such processes are not without time and cost implications, so we need to understand the purpose for which we are gathering data.

However, as I said, the data would need to be as comprehensive as it could be in order to give the clearest possible picture of how the legislation was working in practice and to inform any future decisions about how the legislation might need to be adapted.