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Displaying 241 contributions
Finance and Public Administration Committee
Meeting date: 17 December 2024
Liam McArthur
Again, those are interesting and legitimate questions to raise. I would probably question whether it is the antithesis of the Hippocratic oath. I am not a medical professional, but I have spoken to many who do not see it in those terms. To be involved in helping to manage and end a patient’s suffering, whether it is pain or existential suffering, is something that they feel is consistent with the oath that they have taken.
This might be a small step in terms of the cohort and the numbers that might be involved, but I do not underestimate the extent to which it is a significant step for the medical professional and society. It has always struck me that public support for the choice has been consistently and overwhelmingly strong for many years now, but there is a difference when you are making a decision as legislators to change the law. You weigh up a series of different factors, and it is not as simple as saying whether you are in favour of or against something. Those who are making the arguments on both sides of the debate come from similar places in terms of what they want to see and their compassion and care for the best interests of patients and the vulnerable, but they come to different conclusions about how that is to be achieved.
Those discussions are already happening, and not just because of my bill, although I think that it has acted as a bit of an accelerant. They are taking place in the palliative sector and the hospice sector. I spoke at the Hospice UK conference at the end of last month and it was clear that, in the staff rooms in hospice communities, discussions are taking place not just among the medical staff but among the wider hospice community about what it is to be patient centred and to give patients as much control and autonomy as possible to recognise their needs.
Finance and Public Administration Committee
Meeting date: 17 December 2024
Liam McArthur
I think that I have exhausted any and all speaking notes that I might have had, convener. Thank you very much.
Finance and Public Administration Committee
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
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.
11:45At 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
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.
11:30Finance and Public Administration Committee
Meeting date: 17 December 2024
Liam McArthur
As I said before, the bill does not place a duty on anybody to provide the service. There is a robust conscientious objection provision in the proposed legislation. Unless and until medics have the training that they require in order to carry this out, they will not be in a position to carry it out even if they want to. The proposed legislation does not create a right; it sets a legal framework within which the service can take place. However, if a person is unable to access two medical professionals who are able to provide the service, which I think would be more of an issue in the early years after introduction, that will be a barrier and impediment to accessing it.
The number of medical professionals who would be involved is relatively small. I looked at the figures for Victoria and for Queensland, which in both instances are just south of 400—I think that 380 and 390 medics, respectively, are registered to provide the service there. The number of those who have actively provided it is down around 300; in Queensland, over the course of 2023-24, that number was about 120. The numbers are not huge.
I understand the issue that you are raising about postcode lotteries. This service, like so many others, would need to reflect the different circumstances and challenges that there are in delivering health and care services in different parts of the country. I see daily in my constituency and region the ways in which services delivered there look and feel different, because they have to be different. Health boards, either independently or acting in unison with others in the region, would need to decide how they would deliver the service in a way that met patient needs and reflected their circumstances. I cannot see health boards opting out of providing the service, but I see them having sufficient latitude to determine how best it could be delivered in a way that fitted with the provision of other health and care services.
As I said, the proposal is embedded in the existing health and care infrastructure. That distinguishes it from previous bills of this type. I think that that helps to provide some reassurance because of the safeguards that are already there—the transparency, reporting requirements and all the rest of it. That also means that it needs to reflect how the delivery of health and care can differ across the country.
Finance and Public Administration Committee
Meeting date: 17 December 2024
Liam McArthur
There are provisions in the financial memorandum for oversight, and not just of individuals. I would expect that to be a requirement of how organisations are governed. They would need to be governed in accordance with the law and the guidance as those stand. As guidance develops and secondary legislation comes through, regulators and professional bodies would need to adapt their own guidance and orders to reflect that. In fact, they would have had input into the law and guidance.
Finance and Public Administration Committee
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
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
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.
12:30The 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.