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Official Report: search what was said in Parliament

The Official Report is a written record of public meetings of the Parliament and committees.  

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Dates of parliamentary sessions
  1. Session 1: 12 May 1999 to 31 March 2003
  2. Session 2: 7 May 2003 to 2 April 2007
  3. Session 3: 9 May 2007 to 22 March 2011
  4. Session 4: 11 May 2011 to 23 March 2016
  5. Session 5: 12 May 2016 to 5 May 2021
  6. Current session: 12 May 2021 to 2 August 2025
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Displaying 162 contributions

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Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I go back to what I said in my opening statement: I do not think that anybody knows. We can draw on the evidence from elsewhere, from which you can quite confidently predict a relatively low number to start off with. The rise in public awareness over time, as well as the rise in public confidence, perhaps, and the confidence of medical practitioners and their ability to get through the required training in order to carry this out, helps to support or explain the increase in numbers that you have seen.

It is extremely difficult to predict what will happen in the first year or two, and even in the first five years. What I have sought to do in the financial memorandum is to explain that Oregon and Victoria were chosen because they gave us data sets over a more prolonged period. Queensland’s legislation is more recent in its introduction, and therefore the data available in that respect is not so extensive over a certain time period that it avoids the problem of our seeing just a single year or a couple of years, which might not be reflective of longer-term patterns.

With Queensland, you are talking about a jurisdiction in Australia that followed not just Victoria, but other jurisdictions that were introducing such legislation. I think, therefore, that what you had in that case was heightened public awareness of assisted dying as a result of the debate that had already been taking place in other states in Australia. I suppose that Oregon and Victoria were the prime movers in the US and in Australia, so their situation is probably more reflective of that in Scotland, where we could be the first jurisdiction to introduce such legislation and would, as a result, need to go through the process of raising awareness and building confidence among medical practitioners.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I have been on committees that have been quick to criticise financial memorandums that have given broader ranges. I have acknowledged that there are different models that we could use, and that, if we used a different model, we would probably come up with different figures.

When it comes to the costs, there is an assumption that, with someone who goes through with an assisted death, as opposed to someone who simply makes an initial application, there will be a cost saving in relation to the treatment or care that they will forgo as a result of having opted for an assisted death. We would, therefore, see the savings go up with the costs, which is perhaps different from what we might see in financial memoranda to other bills. For example, if the figures for take-up were likely to be massively higher, the costs would be significantly higher, and that would just be a cost that would be borne.

12:00  

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

Again, that is not an unreasonable assumption to try to build in, but it would be very difficult to reflect that.

It is fair to say, on the basis of the figures that we see pretty consistently across the jurisdictions, that those who are accessing assisted dying are largely those with various cancer diagnoses. Between 65 and 75 per cent, and even up to 80 per cent, of those who access it in Victoria, Queensland, Oregon and California fall into that range. The point that you make is not unreasonable, but it is very difficult to map that into additional figures.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I would think that most of the jurisdictions have a prognosis timescale. For example, in California, the six months is linked to entitlement to a hospice at home service. It is driven by a desire to ensure that assisted dying is accessed by those with, as I have described in my bill, an advanced and progressive terminal illness. The reason for shying away from setting a specific timeframe is that it is hellishly difficult to do so.

In the previous session, the Parliament considered legislation on access to terminal illness benefits. Initially, the Government came forward with a bill that linked that to a six-month prognosis. Understandable concerns were raised by people in the hospice and palliative care sector, as well as by medical professionals across the board, who pointed out how difficult it is to make that prognosis, particularly with certain conditions, and how the prognosis might even change over time, in relation to the timeframe rather than to the terminal illness itself. Having taken that decision in the previous parliamentary session, I felt that it was consistent to apply a similar logic in relation to this bill.

Again, international experience suggests that people do not access assisted dying at the point of diagnosis—unless the diagnosis is very late on, which cannot happen. Requests can come in relatively early on, but they are not necessarily acted on until much later. As I said in my opening remarks, one of the requirements on medical professionals is to ensure that the individual is aware of all the care and treatment options that are available, including palliative and hospice care. The decision then becomes more informed and will almost certainly be part of an on-going discussion, unless the patient is very close to the end of life.

Again, I do not think that there is anything to suggest that, even without a prognosis period, we are likely to see an inverse trend to pretty much every other jurisdiction. That includes jurisdictions with a more expansive model, but, even just sticking to those jurisdictions with a terminal illness and mental capacity model, I would suggest that the smaller numbers in the first instance are a reflection of public awareness, patient awareness and confidence and medical professionals’ confidence or preparedness, having gone through the requisite training and all the rest of it.

Whether you start with the number that I have put in my financial memorandum or with a higher or lower number, the trend or trajectory is reasonably consistent across a lot of jurisdictions. If you start with a higher number, I suspect that you will find that you will be taking in numbers that otherwise would have come later on. As I have said, with Queensland, some of this is a reflection of the public awareness raising and, indeed, the preparedness of the medical community in the area compared with Victoria at the point of introduction. Those numbers should, over time, end up tracking in a broadly similar way.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

Obviously, the numbers are driven by requests for assisted dying. It is worth pointing out that requests do not necessarily always result in people taking the medication or following through with the process. About a third of those who apply for an assisted death in jurisdictions such as Oregon and Victoria—this is fairly consistent across those jurisdictions with terminal illness mental capacity models—do not end up proceeding with it. A number of people who apply and express an interest do not go through with it.

You need to bear it in mind that the request is one part of the equation. The other part, which I touched on earlier, is the medical professionals who have the training to undertake the process. We might come to discuss the timeframe for implementation. Different jurisdictions have taken very different approaches—some have introduced the process within six months, which, to me, seems to be on the short side, while others have taken 18 months to two years. I suppose that the longer the lead-in time, the more opportunity you have to raise awareness, build confidence within the medical community and get practitioners signed up and trained to provide the service.

Even if the request or the interest in going down that route is there, it is very much dependent on the resources that are available to deliver it. With the best will in the world, although we will be able to lean on the experience of other jurisdictions with respect to the training that is provided and all the rest of it, that will also be a constraining factor on numbers.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

The Dutch system operates very differently from the systems in Victoria and in Oregon, which are terminal illness mental capacity jurisdictions. That said, I absolutely acknowledge that a level of peer support through professional bodies will be necessary and desirable. We have seen that in all the jurisdictions where legislation has been introduced. However, I cannot think of anywhere where peer support has been introduced through the legislation, as opposed to having grown organically, but I certainly recognise that there is a need for such support.

11:45  

At the same time, there is ample evidence from those jurisdictions that practitioners who are involved have found it to be one of the most rewarding elements of the work that they do. Providing a good death for their patient is difficult—it requires skills—but it is rewarding to see the comfort and the relief from suffering that they are able to provide, not just for the patient but for family members.

I acknowledge that the issue is there and I acknowledge that emotional support would need to be in place, as well as peer support through being able to exchange ideas or concerns about individual cases. If you do not see a lot of cases year to year, it is more difficult to manage your skills and develop your understanding and expertise. Having an exchange of information, albeit that patient confidentiality would need to pertain, is important, not just to the welfare of the medical professionals but to patient confidence in the skills of practitioners who are involved.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

The question allows me to put on the public record, for the first time, my gratitude to CHAS. It has responded to the committee’s call for evidence, as it has to the Health, Social Care and Sport Committee, but also, from a personal perspective, I have had a number of meetings with CHAS, and I have found its input invaluable.

You are absolutely right about the complexity of the cases that CHAS deals with. It is worth stating up front that the overall number of people who would access assisted dying and who are of the age profile that CHAS deals with—regardless of whether you believe that the figure in the financial memorandum is an underestimate—will be extremely small, and there will possibly not even be one such patient in any given year. However, I think that CHAS’s concerns about the complexity of the support and treatment that it provides can be reflected in the process.

It is difficult to describe a separate pathway that would pertain to somebody who is 16, 18 or 20, but the on-going treatment and support that was being provided would need to dovetail with that process, and those providing that treatment and support would also need to be involved. The two medical professionals—the co-ordinating physician and the second medical professional—could not have had a prior involvement with the case. Those would still be the requirements, but that does not preclude others from being involved in the decisions. I find it inconceivable that decisions in relation to those who are in the care of CHAS would not continue to involve that mix of specialisms.

We should acknowledge that, albeit that two medical professionals would make the diagnosis and assessment, in instances where there was any doubt—whether that was around mental capacity or possibly terminal illness, although I suspect that it is more likely to relate to capacity—a referral to a specialist would have to take place. I imagine that those specialists would be involved, anyway, either as a co-ordinating physician or as a second physician but, where it was felt that there was benefit to be gained from a referral to a further specialist, that would and should happen.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

The financial memorandum provides a number of ranges.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I think that that is difficult to predict or anticipate.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I know, but there is not a residence requirement in relation to Switzerland. The point that you are making is that, at the moment, we are kind of outsourcing that service for people who can afford it.