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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 4 April 2025
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Displaying 149 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

Pulling together a financial memorandum of this type is difficult—not only is it unprecedented, but the data and precedent that you would normally rely on invariably are not there. Because it is anticipated that the process would be embedded within health and care, it is also difficult to distinguish it from things that are already happening in health and care provision.

Given the situation that I have described for somebody who is being supported by CHAS—as I say, they may very well have a wider cohort of medics already involved—that process will be more complex, involved and costly. On whether that needs to be reflected in guidance or should rest on the judgment of medical professionals, much of the bill rests on the judgment of medical professionals, and second-guessing that is dangerous and something that I do not think that legislation should seek to do.

However, the whole process will be very different for an individual of the type that CHAS supports than for somebody in their 60s, 70s or 80s. Those people will almost certainly have medical professionals who have been involved in their care over a prolonged period, but the extent to which the process needs to be supported will be different. These are people who are reaching the end of life, so there may be a series of comorbidities and all the rest of it. The judgment that people exercise and their involvement in medical decisions around their treatment will be handled differently than they will be for young people in their late teens.

Finance and Public Administration Committee

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

Meeting date: 17 December 2024

Liam McArthur

I would certainly acknowledge that. Training will be crucial, but we are not reinventing the wheel here, as many of the materials and whatnot exist in other jurisdictions, so we will be able to draw on them as and when appropriate.

On-costs are very difficult to calculate. Even the Government finds it difficult to calculate and express on-costs in financial memoranda for its own bills. That is not necessarily a criticism; it is simply a reflection of the fact that, if you are going to include figures in a financial memorandum, you need to be reasonably confident about the basis on which you are doing so.

It is not unreasonable to say that, if training and support will be required to accompany the provision of the service, that will have a knock-on impact, but that will be happening all the time anyway. One would like to think that, whatever pathway a patient is on—whether that involves curative treatment or palliative treatment—the continuity of care will be such that the provision of treatment will be made as smooth as possible. There will be an opportunity to look at that on an annual basis and to see, as part of a five-year review, whether things have happened that were not necessarily anticipated or whether a shift has taken place in where the pressures arise and, if so, how we can address that.

Finance and Public Administration Committee

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

Meeting date: 17 December 2024

Liam McArthur

The Netherlands uses an entirely different model. Its criteria have always been more expansive, as have the eligibility criteria in Belgium and, more recently, in Canada, where assisted dying legislation arose from a case brought before the Supreme Court of Canada on the basis of the Canadian constitution. Parallels with those systems just do not exist.

Eligibility criteria have not expanded in any of the jurisdictions that have passed a terminal illness and mental capacity model. What has changed—you may fairly allude to this—is that some of the ways in which safeguards apply have been altered. We heard that, in California, under the five-year review of the legislation, the wait period, which I think had been 14 days or thereabouts, was removed. It was found to have excluded a significant proportion of patients—I cannot remember how many, but around a third springs to mind. A significant cohort of those who had been found to be eligible had not accessed assisted dying because they died before they had a chance to take the medication.

12:30  

The wait periods in other jurisdictions are shorter—I think that it is nine days in Victoria—but a witness to the Health, Social Care and Sport Committee the other week said that their figures show that those dying before they have exhausted the wait period is up to around a quarter or a third of those who are applying.

I think that 14 days is a sensible safeguard to put in at the outset. Where there is an expectation of death more quickly—within a month—there is a provision that allows you to accelerate that to 48 hours. I suspect that making the diagnosis and going through all the processes that you would be required to go through would take you beyond the 48 hours, but I have sought to learn from those experiences in the drafting of the bill.

If a safeguard is not providing any safeguard and is simply an obstacle to somebody accessing something that they should be able to access, that requires a different calculation. As I said, on the eligibility criteria point, there are no examples, which was the finding of the Health and Social Care Committee back in February.

Finance and Public Administration Committee

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

Meeting date: 17 December 2024

Liam McArthur

I am happy to look into that and write back to the committee, if that would be helpful, but I am not aware of any. Had there been any, they would have stood out and I would certainly have drawn on them in the financial memorandum.

Finance and Public Administration Committee

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

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

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

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

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

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.