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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 19 December 2024
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Displaying 86 contributions

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Finance and Public Administration Committee [Draft]

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

Meeting date: 17 December 2024

Liam McArthur

I have a lot of sympathy for that point. To give a personal example, I was heavily involved in the campaign for the Balfour hospital in Kirkwall to get a CT scanner. Unfortunately, the business case for that was built such that NHS Orkney accrued all the costs of the purchase of the equipment, the training of those operating it and so on. The Scottish Ambulance Service made the savings, as the number of emergency or planned air ambulance transfers to Aberdeen was reduced. I understand that where the savings fall is not necessarily where the expenditure is felt, but that is already happening. I used the example before of different treatment pathways—curative and palliative, which often operate simultaneously—where savings transfers are already happening.

My proposals set out a mechanism for annual reporting, as well as for a five-year review of the legislation as a whole and its operation. Where the way in which assisted dying is being accessed raises issues that might require to be addressed through funding streams, there would be an opportunity to do that. That does not necessarily mean that there would need to be a transfer from one area to another. It could lead to arguments being made for additional funding on top of the existing provision for a particular area.

I understand the concern, but I go back to the fact that the number of cases that we could reasonably expect to see is likely to be relatively small, certainly in the initial years. The number is certainly expected to grow over the 20-year time horizon that I have set out in the financial memorandum, but we are talking about relatively small numbers. I do not dismiss the issue, but there would be mechanisms for identifying where that was causing a problem and, if that were the case, there would be the evidence base on which to make different decisions on the allocation of funding or on whether additional funding was needed.

11:30  

Finance and Public Administration Committee [Draft]

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

Meeting date: 17 December 2024

Liam McArthur

I acknowledge that the figures in relation to 90 per cent of people dying at home reflect over the final six months of life, as opposed to the location in which they ended up passing away. Looking at how assisted dying is operating in practice in other jurisdictions, it is not surprising that many, if not most, people want to die at home, if possible. Being able to exercise a degree of control over the way and the timing of that death may see a shift in patterns, but the process is likely to take place in hospitals and hospices as well.

In drafting the legislation, I was conscious of the difficulty of describing and coming up with an exhaustive list of where that process could take place, while recognising and respecting individual choice. It was easier to describe places where assisted death should not be taking place. One self-evident example is that you would not want it taking place on a hospital ward with other patients around—if it were taking place in a hospital, suitable premises would need to be set aside to allow it to happen in a discreet fashion and so on.

As I said, you might see a shift in the pattern of where people end up dying, because they have more choice and control over it.

Finance and Public Administration Committee [Draft]

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

Meeting date: 17 December 2024

Liam McArthur

That is not something for which my bill can legislate—

Finance and Public Administration Committee [Draft]

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

Meeting date: 17 December 2024

Liam McArthur

As I mentioned in my opening remarks, there is a residence requirement of 12 months and a requirement of registration with a medical professional. I get that people with a terminal illness might have a prognosis that stretches out years, and that they might decide that they want to move to Scotland because they think that, in their context and should the need arise, access to assisted dying would be more manageable here than it would be elsewhere in the UK.

People move to Scotland for a host of reasons, such as quality of life and all the rest of it. The numbers involved are extremely small, as I suggested. It is less likely that you would uproot yourself and move when you have an awful lot else going on in your life. However, I cannot rule out the possibility that somebody might individually take that decision. On whether that is likely to be part of a trend, I say that the residence requirement is firm, although people may well believe that it needs to be toughened up and extended—the Health, Social Care and Sport Committee might want to look at that. However, as I say, it is difficult to imagine that people will move around the UK for the reasons that you suggest.

Finance and Public Administration Committee [Draft]

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 [Draft]

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

Meeting date: 17 December 2024

Liam McArthur

You could make a similar argument about withdrawal of treatment and refusal of food and liquids, and those things are happening at the moment. The international evidence from places such as Australia and California is that, when there is a view within the wider family, it is more often akin to what Liz Smith alluded to earlier: some family members are not necessarily happy with the fact that their family member has opted to go down the route of requesting assisted death. The resistance comes from an unwillingness to accept that, rather than a desire to accelerate the process.

That is why the assessments of terminal illness and mental capacity sit alongside an assessment of the rationale for why the individual has made the request. That is about understanding what led them to that conclusion and whether coercion or undue influence has been exerted on the patient. I would argue that that safeguard is not there to the same extent in other areas of medicine, where some of that pressure is perhaps being applied.

When it comes to protecting the interests of patients and of medical professionals, the safeguards in my bill are considerably stronger than what there is at present. They can bring a degree of robustness and transparency into areas of medicine that are lawful at the moment, and not just to the process that I am describing.

Finance and Public Administration Committee [Draft]

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

Meeting date: 17 December 2024

Liam McArthur

I refer back to the report that the Health and Social Care Committee in the Commons published in February. It found no evidence internationally of a so-called slippery slope in terms of eligibility criteria expanding over time in models that were based on terminal illness and mental capacity. That dates back to Oregon’s passage of its legislation in the 1990s, through to more recent examples in Australia. You can make the argument that it is maybe too early to say for Australia, but the committee found no international evidence of a change in the eligibility criteria.

Finance and Public Administration Committee [Draft]

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 [Draft]

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 [Draft]

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.