Finance and Public Administration Committee [Draft]

Meeting date: Tuesday, December 17, 2024

Official Report 889KB pdf

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

The next agenda item is to take evidence on the financial memorandum for the Assisted Dying for Terminally Ill Adults (Scotland) Bill from Liam McArthur, who is the member in charge of the bill. He is joined by Scottish Parliament officials Nick Hawthorne, senior clerk, and Liz Anderson, assistant clerk, from the non-Government bills unit. I wish you all good morning and welcome you to the meeting. I invite Liam McArthur to make an opening statement.

Thank you, convener, and good morning. Before I begin my statement, it will be helpful if I declare some relevant interests. I receive funding for an additional member of staff from three permissible donors—Friends at the End, Dignity in Dying and the Humanist Society Scotland—and the support is currently for a staff member one day per week. The Humanist Society Scotland also funds the development and maintenance costs of the domain and the hosting of a website that I use to publish materials relating to the bill—that was, ostensibly, prior to the formal introduction of the bill. Dignity in Dying paid the costs that were associated with my visit to California as part of a cross-party delegation of MSPs that met various organisations and individuals in relation to the state’s End of Life Option Act, and I refer members to my entry in the register of members’ interests for more details on that.

Members will be aware that I formally introduced the Assisted Dying for Terminally Ill Adults (Scotland) Bill in Parliament in March this year, following the usual members’ bills process, with the support of the non-Government bills unit. The bill aims to allow mentally competent terminally ill eligible adults in Scotland to voluntarily choose to be provided with assistance by health professionals to end their own lives.

The approach that I have taken in the bill and related accompanying documents is purposefully quite different from that taken in previous proposals and bills on the issue that the Scottish Parliament has considered. The approach and the estimated number of people who may request assistance reflect the bill’s provisions and the form of assisted dying. In effect, I am legislating to allow a relatively small cohort of people who request assistance to end their own lives to be provided with such assistance.

There have been suggestions that the numbers involved and, likewise, the costs will be higher than anticipated. However, the jurisdictions where numbers are significantly higher either do not have comparable legislation to the bill that I have introduced or have notably different circumstances from those in Scotland, and the financial memorandum reflects that.

My intention from the outset was to introduce a bill that would make it legally possible for terminally ill adults, if assessed as eligible, to be provided by willing health professionals with assistance to end their own lives. I wanted a bill that detailed, as far as possible and within the Scottish Parliament’s competence, the process that is involved before, during and after. The financial memorandum reflects the approach that is taken, the bill’s provisions and the limitations that the accompanying documents acknowledge.

To be eligible, a person must be terminally ill, aged 16 or over, have been a resident in Scotland for at least 12 continuous months, be registered with a GP in Scotland and have the mental capacity to make the request. A person must have had health and social care information and options—for example, about palliative and hospice care—and information about assisted dying explained to them prior to making a final decision. A person must also make the decision of their own free will, without coercion or pressure, to the reasonable satisfaction of healthcare professionals.

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The bill will establish a lawful process for an eligible person to access assisted dying that I believe to be safe, controlled and transparent. The process broadly involves a person stating that they wish to be provided with assistance to end their own life and being assessed for eligibility by two doctors, acting independently of each other. If assessed as eligible, a person can give a further indication that they wish to continue and then be provided, at a time of their choosing, with the substance for self-administration to end their own life.

I believe that that will give people a choice and enable them to avoid the existential pain, suffering and symptoms that can be associated with terminal illness. In turn, it will afford them autonomy, dignity and control over the end of life.

The bill will make it lawful for a person to voluntarily access dying if they meet the criteria as set out in the bill and for willing health professionals to assist in that process, while continuing to ensure that assisting death outwith the bill’s provisions remains unlawful.

The bill also provides that no one is compelled to participate directly in the process if they have a conscientious objection to doing so. The provisions ensure that relevant data and information is collected, processed and published in annual reports to aid transparency and understanding. In addition, there will be a requirement for the legislation to be reviewed after five years. That will afford the Scottish Parliament, health and care professions and wider society an opportunity to take stock of the practical experience of assisted dying.

The financial memorandum—for the first time with any piece of proposed legislation on this subject in the UK—attempts to estimate the costs and savings that would be associated with implementation and the impacts of such legislation as far as it was felt reasonably possible to do so. That was done in the absence of any precedent for similar enacted legislation in the UK, and with often very little relevant or meaningful data—or, in some cases, none.

The approach that is taken in the financial memorandum is based on an estimation of the potential annual number of people who will request an assisted death and the number of people who will go on to self-administer a substance and end their own life. Estimates are provided for the first year in which assisted dying will be available, and the financial memorandum projects the figures over 20 years. Comparable data from Oregon in the US and Victoria in Australia was used to inform those estimates. On the basis of the assumptions and methodologies used in any available meaningful data, estimates for possible costs to the Scottish Administration and for health and care services in Scotland are provided.

The memorandum acknowledges that the legislation is likely to result in savings as well as costs, and that, broadly speaking, it is expected to be cost neutral. That is because a cost is associated with the processes that are involved in a person being assessed and potentially provided with assistance to end their own life, such as clinical and associated administration costs, and because there is a commensurate cost saving from a person no longer receiving care for however long they might have lived.

International evidence indicates that case numbers are likely to rise annually, certainly in the initial years of assisted dying being available. Therefore, to give an indication of how rising case numbers could affect costs and savings, the memorandum gives estimated figures for year 1 and then on-going costs until year 20.

Following the publication of the memorandum, it came to my attention that table 3, which sets out estimated costs to health services, and table 4, which sets out estimated overall costs, conflated some of the year 1 and on-going costs and year 20 estimated costs. I subsequently wrote on 17 June to this committee, as well as to the Health, Social Care and Sport Committee, to amend and present some of those costs more accurately and clearly. I wrote again to both committees on 14 October to note two other minor discrepancies.

The net effect of the issues that are noted in those letters is that the upper-end total estimated costs of the bill are £4,036 higher than those that are estimated in the financial memorandum. Although they are relatively minor, I extend an apology again to the committee for those errors.

I read with interest the 22 responses that you received to your call for views, and I thank all of those who took the time to respond. I note that NHS Fife, which was the only health board to respond, considered the estimated costs in the memorandum to be reasonable and the bill to be broadly cost neutral.

I welcome the acknowledgment across many responses, including from those who are more critical of the financial memorandum and of the proposal for assisted dying, that attempting to estimate costs in this area is extremely challenging and complex, because of a lack of meaningful data and/or precedent in many of the relevant areas.

I noted the issues that were raised in other responses, such as the suggestion that the case numbers are underestimated. I acknowledge that different assumptions can be made and methodologies used that would result in different estimates. Depending on which assumptions are made, one could estimate the cost to be higher than the memorandum does, or indeed to be lower. Frankly, none of us knows exactly how many people might wish to begin the process and how many might go on to be provided with assistance, and one could make a range of different but incompatible estimates. I am satisfied, however, that the assumptions that are made and the methodology that is used in the memorandum are evidence based, that they reflect a justified midpoint of the extremes of opinion and that they provide a reasonable estimate of likely numbers.

I also note the comments that the potential costs associated with areas such as training and the provision of support or guidance have been underestimated or excluded. I accept that some organisations and individuals have different thoughts on some of the issues. However, the estimates that are set out in the financial memorandum are based on available evidence, practice and expectations.

In relation to the comments about potential savings, I reiterate that, although some savings are likely, saving money is not and never has been a policy aim of the legislation. The bill is about giving terminally ill adults a choice to end their own life if they wish to and are eligible to do so, not to save money.

Thank you for your patience, convener. I look forward to answering questions from you and committee members.

Thank you for that helpful opening statement. This is an emotive issue, and I know that colleagues around the table spent a lot of time deliberating over the submissions that they received and the financial memorandum. I have no doubt that they are already digesting aspects of the statement that you just gave. I have written down 29 questions to ask you but, following your opening statement, I will probably ask only 28 before opening out the session to colleagues around the table.

You have touched on a number of the issues that I and colleagues will ask about, so let us get straight into it. We are here to deliberate not on the pros and cons of the policy but on its financial aspects, so let us look at that. Cerebral Palsy Scotland said:

“we are concerned that continued pressure on NHS resources could lead to individuals and clinicians making decisions not in the person’s best interests, but according to NHS and social care budgets.”

I appreciate that you have said that that is—obviously—not the aim of the bill. Care Not Killing said that The Journal of Clinical Ethics published a highly controversial paper in 2020 that reported that a Dr Shaw, who is based in Glasgow. described the potential savings of allowing assisted dying as the “elephant in the room”. Care Not Killing said:

“Mr McArthur should acknowledge this point about the danger of cost savings becoming a motivation for people seeking assisted suicides”.

You will be aware that there are a number of additional quotes along similar lines in the submissions. Given what the Canadians have said about the savings that they believe will be made, how do you respond to that and persuade people that saving money will not enter into how the bill is implemented, if it is passed by Parliament?

I respond by saying that the proposals lean heavily on clinician judgment. At the moment, we trust clinicians to make a range of decisions, including those at the end of life. The proposals that I have set out in my bill would make for the most heavily safeguarded end-of-life option that there is—not least the requirement for not one but two clinicians to be involved in the diagnosis and the assessments.

Ascribing motives to medical professionals in the way that Care Not Killing has suggested is unfair and unhelpful to the debate that we need to have on these issues. As I said in my opening statement, I acknowledge that savings will be made when treatment that would otherwise have been given is not required or delivered, but that is not the motivation behind or the objective of the bill.

At the moment, decisions are being made to move patients from curative pathways to palliative pathways, and they are made in the patient’s interests and in discussion with the patient—they are led by the patient’s interests. Such moves may end up being less costly—it depends on the treatment that is given—than was the case with the pathways that the patients were previously on. However, I do not believe that medical professionals are taking such decisions, or advising patients on them, on the basis of cost savings.

We may come on to this in questions about investment in palliative care, but I note the evidence that the Health, Social Care and Sport Committee has been hearing in its evidence sessions over recent weeks. Last month, witnesses made the point that what they have seen in Australia is increased engagement with palliative care, because the discussions that are required as part of such a process—as I am looking to establish under my bill—have been activating such engagement in a way that has not always happened.

That reflects the point that the additional safeguards that my bill will introduce can help to provide a degree more transparency and robust protection around things that are currently legal. That includes the withdrawal of treatment and the issue of double effect, which relates to managing pain in the certain knowledge that palliative sedation can increase the risk of accelerating death.

At the moment, we ask medical professionals to operate in a relatively grey area, often without the input of patients, and more often than not with the involvement of families. Whether or not there are cost savings, I do not believe that medical professionals, who we trust to make such judgments, would be motivated in that way. Protections are in place to guard against such an outcome.

Conversely, in its submission, the Scottish Partnership for Palliative Care said:

“Although assisted dying may lead to some savings ... it is important to remember that additional costs may be incurred in one service/setting whilst savings accrue elsewhere without a mechanism to redistribute funds between siloed budgets.”

It goes on to say:

“Assisted dying may be experienced as an unfunded additional demand locally, although there may be net savings across the system.”

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.

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Having flexibility in the system is important. I remember a similar circumstance a decade or more ago when I was trying to get a dialysis machine for Arran from NHS Ayrshire and Arran, which I was able to do.

You touched on numbers in your opening statement and again just now. The Royal Pharmaceutical Society in Scotland has said that, according to the financial memorandum,

“the cost of each dose provided to a terminally ill adult to end their own life would be £80. We think this is likely to be a huge underestimate of the actual cost for each dose, once all the costs of procurement, storage, facilitation, disposal etc. are considered.”

It goes on to say:

“Furthermore, in Queensland, where voluntary assisted dying legislation is in place, circa 300 people had an assisted death in the first 6 months. This is for a population which is very similar in size to Scotland.”

You have touched on the fact that the legislation in different areas, whether Victoria, Oregon, Canada or Queensland, is different, but a common theme in the evidence that we have received is that there is an underestimate of the number of people who would wish to progress with assisted dying, if the legislation were passed.

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.

I do not think that awareness is going to be an issue, to be honest—it is going to be very high.

I note that, in the legislation that you are proposing, the provisions are not, as with the bill south of the border, limited to terminally ill people with six months or less to live. There is no six-month limit; the time period could be a year or two, which, it could be argued, would mean that someone like Chris Hoy, who is terminally ill, could be eligible. Therefore, when one looks at the numbers, they seem very much on the low side. Indeed, you are anticipating only a handful. However, although the numbers in other jurisdictions might have picked up slowly, if there is what one might call, in effect, a backlog of people, you might find quite a jump at the start. Do you not think that that might happen?

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.

Okay. I am sure that others will touch on the numbers, but the financial memorandum’s estimate of 50 to 100 people by year 3, compared with 300 people in six months in Queensland seems like a big anomaly. I will move on from that.

The Scottish Partnership for Palliative Care has said that

“The Bill doesn’t even place a duty on NHS Boards to provide AD”

and goes on to say that

“The Financial Memorandum states that ‘only around 10% of people’ die in hospital which is factually incorrect—in 2023 46% of people died in a hospital.”

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.

There might be a shift if, indeed, there is not

“a duty on NHS boards to provide AD”.

We could have a situation, one imagines, where one or two boards could decide that the medics in their area are not keen to take that process forward and one could end up with a postcode lottery. That is what the Scottish Partnership for Palliative Care is suggesting in its submission. It also says:

“The Bill is very largely silent on the organisational arrangements by which AD will be delivered. It would make AD a legal activity for registered practitioners, but places no duties on organisations to provide such a service.”

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.

Children’s Hospices Across Scotland has raised similar concerns.

The Scottish Partnership for Palliative Care also said that

“the Bill makes no provision for the inspection and scrutiny of services providing AD, and there is consequently no cost identified in the FM”.

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.

I think that that is taken on board. From our perspective, the issue is just that no cost has been identified.

I will ask only one more question at this point, because colleagues are keen to come in. Living and Dying Well has said that

“Some 38% of Dutch physicians have sought emotional support after approving a request for an AD, and there will likely be cases where healthcare workers in Scotland need time to recover after participating in the process”,

but the financial memorandum does not seem to provide for the cost implications of that. Obviously, if healthcare professionals are not able to work, there will be an implication for health boards.

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.

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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.

I have a few more questions to ask, but I want to open up the session to colleagues around the table.

Good morning, Mr McArthur. I will follow on from the question about support, particularly in relation to the voice of young people, following on from some of the comments in the CHAS submission. Naturally, the decision that we are discussing is often a very difficult one to make, particularly if the family involved has conflicting views on what should happen. When it comes to younger people, it is even more difficult. On what evidence have you based your costings on the extra support network that would be required for such situations?

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.

I, too, put on record my utter admiration for CHAS, which is a wonderful group that does extraordinary work. Inherent in its submission is a concern that the staff involved would need sufficient depth of training to be able to deal with what are exceptionally difficult circumstances surrounding the support for a person who has opted for assisted dying, including family decision making. It is about the level of support. CHAS’s written submission states that the estimates do not appear to take account of the fact that the guidance development processes have to be undertaken by

“practitioners and other non-Governmental stakeholders”.

The submission flags up that the estimates might not quite match the costs that CHAS feels might have to be applied. Could you respond to that?

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.

Do you foresee any circumstances where opportunity costs will come into play? Some staff, especially experienced staff, may have to be taken away from treating other patients to help in these difficult circumstances, whether that is in hospitals with older people, or with younger people.

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.

Thank you.

I want to start with the issue of the comparators that you selected, which has been partly covered. Why did you choose to base the numbers more on what has happened in the US than on what has happened in Australia?

I chose to use Oregon and Victoria—in other words, I used two comparators. There are various differences in how healthcare is delivered in the US and how it is delivered in Australia, and there are various differences in how it is delivered in Australia and how it is delivered in the UK, so, in a sense, neither the US nor Australia is a direct comparator. There is no precedent that we can lift. This is the first proposed system of its type in the UK.

Does the Australian system not represent a better comparator for Scotland than the system in the US?

If I had relied solely on Australia, that would have been justified in informing our approach here in the UK, or indeed in Scotland, where health is devolved, as there are variances in how healthcare is delivered across borders. However, I thought that it was helpful to take examples from jurisdictions in two different countries, because that gets us away from simply relying on the similarities or the differences between Australia and here, or between the US and here.

In addition, the data sets that are available for Oregon provide a picture that speaks to the 20-year time horizon that is set out in the financial memorandum. Victoria was selected because it provides the longest-running data set in Australia. The situation is different when we are talking about the first jurisdiction in a country to introduce legislation on a particular subject. I take the convener’s point that awareness of assisted dying is likely to be heightened here because of the debates that we are having now. Nevertheless, when you are the first jurisdiction in a country to get a system up and running, that will present additional challenges in relation to the extent to which you are finding your way.

As I said, I thought that there was a benefit in having longer data sets and in not relying simply on one country-to-country comparison.

Would it not have been better if you had presented the anticipated cost as a range of numbers? You have given an anticipated figure, but would it not have been better if you had said that the figure could vary, given the significantly higher totals that are available in other jurisdictions—for example, in Australia, which has a more comparable system? Would it not have been better to have laid out your figures in such a way as to say, “The cost could be as low as this, but it could be as high as that number over there”?

The financial memorandum provides a number of ranges.

It is quite a restricted range, compared with what the evidence says.

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  

Have you made any assumptions in the numbers with regard to our poor health record in Scotland? We have the highest cancer rates in the developed world, in particular across Europe. We might, therefore, anticipate that there would be a higher uptake of assisted dying as a result of longer and chronic illness.

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.

Okay. I will move on to palliative care. As a choice safeguard, we have to have excellent palliative and hospice care across the country. Do you recognise that? That is part of the big public debate.

Yes.

You have not, however, made any assessment of increased costs to increase the standard of palliative and hospice care in order to ensure that we have that choice safeguard in place, have you?

That is not something for which my bill can legislate—

But the bill will have an impact in that respect, given the way that the debate has been led.

Well, no—the bill itself has served many useful functions, among which have been that it has shone a light on and opened up debate around palliative care, and around end-of-life choices as a whole, because it is not just about palliative care. Some people have quite reasonably made the argument that a lot of what the bill is about relates to issues related to social care.

Nonetheless, you have made a valid point. Hospice UK, in its submission, makes the point that that is an active decision for the Government, whether it is the Scottish Government or, in relation to the bill that is going through Westminster, the UK Government. As I said, the debate around this bill, and around Kim Leadbeater’s bill at Westminster, has allowed greater focus on palliative care. I am certainly lending what support I can to efforts from colleagues—notably, Miles Briggs, with regard to his proposed right to palliative care bill—to ensure that that—

I think that we would all be supportive of that, and I entirely agree that the bill has shone a useful light on palliative care. I also understand that the financial memorandum is about direct consequences of the bill. However, with regard to the impact on the public purse, if we are all saying that palliative care services have to improve—we know that hospice care, in particular, is in a pretty dire and financially precarious situation in various parts of the country—investment would have to be made. That is not represented in the financial memorandum, but there is an impact on the public purse.

As I said, it will ultimately have to be a decision for the Government whether to increase investment in that area. In the report from the House of Commons Health and Social Care Committee in February this year, which was produced on the back of an 18-month inquiry into assisted dying and end-of-life choices generally, the committee reached the conclusion that there was no evidence internationally of a detrimental effect on the quality of palliative care from introducing assisted dying. Indeed, the committee saw a number of examples of the engagement with and experience of palliative care having improved as a result of the introduction of legislation on assisted dying, and of where increased investment had gone in. Victoria is one such example. In a sense, that—

I think that that makes my point, in that that would require extra money.

As I said, we open up the debate in order to allow that to happen, but I have been very clear that my bill cannot legislate for that investment to be made. That is, ultimately, a decision for the Government.

Nonetheless, the debate that we are having exposes where there are deficiencies in access. The quality of palliative care is seen to be high, but access to it can be problematic. There is a need for additional investment, and I would hope that that is what results, in this context.

You mentioned earlier that palliative care practices that are in place will be disrupted by the introduction of assisted dying. Could those practices become defined as assisted dying under the terms of your bill and, therefore, become more problematic and, necessarily, more expensive? You talked about people’s pain being traded off against an acceleration towards death, which is, I think, an acknowledged practice in palliative care. Is there a risk that the introduction of the system as you have defined it will make such practices more difficult and, as a result, more expensive?

I would say the contrary. As I said in response to the convener, there are practices—for example, withdrawal of treatment, refusal of food and liquids and the double effect of palliative sedation that you are referring to—that are happening at the moment. The extent to which patients are involved in those discussions is questionable, but in a sense, they are, to me, variants of assisting a person to die.

There are people who will draw a distinction between those activities and what is set out in my bill, but I go back to the point that, at the end of life, the more options one has and the greater the say and the amount of control one has, the better able we are to say that the approach is patient centred. I cannot see that the bill makes things more complicated or costly; what it does is provide for both patients and medics a degree of protection that does not necessarily exist at the moment.

We touched earlier on the divergence in views that can sometimes arise between patients and some, if not all, family members. It is not difficult to think of situations in which, if some family members felt that the medication, having been increased to manage pain, had also accelerated death, medics might find themselves coming under scrutiny or being accused of acting inappropriately. That would be intolerable from their perspective, because I feel very much that they would have been acting in the patient’s best interests. However, the more the patient is engaged in that discussion, the more medical professionals will feel that they have a safeguard and are not leaving themselves open to such accusations.

My last question is about cross-border interaction with the UK on this matter. Under the scope of your bill, as drafted, the access criteria are far wider than those in the bill that recently passed its first reading in the UK Parliament. Your bill also makes it explicit that the treatment would be provided in the NHS, whereas there is no such explicit commitment in the UK bill, at the moment. People in the UK will also face potentially very high legal costs in order to access the provisions in the bill if it is passed by the UK Parliament.

Is there not a significant risk that, in the event of both bills being passed, a significant number of people will come to Scotland to access that form of care on the NHS in Scotland? Therefore, the numbers will be much higher, and the costs of accommodating people and making the care available will be significantly higher, too.

I would not necessarily say that there are vast differences between the bills—they are both predicated on a terminal illness mental capacity model—but you are right that features of Kim Leadbeater’s bill are different from mine—notably, in relation to the six-month prognosis period. My bill requires an advanced progressive terminal illness to be diagnosed.

It is not clear whether people will have access to legal aid to meet the costs, but according to some estimates, it could cost people tens of thousands of pounds to access a judgment. When it comes to the trade-off between meeting those costs or coming to Scotland and getting the treatment as it is proposed under your bill, surely there will be a cross-border flow of people in that respect.

I think that that is difficult to predict or anticipate.

People are travelling to Switzerland, at the moment.

I know, but they can travel to Switzerland at £15,000 a pop and probably months earlier than they would need to, because they need the physical capacity to do so—

You understand my point, however, that people are prepared to travel for it to happen—

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.

Yes.

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.

Good morning, Mr McArthur. A lot of what I intended to ask has already been covered, so I will be as brief as I can. I agree with the convener that the financial memorandum will probably not be the determining factor for a lot of MSPs when they come to vote on the issue, but it is what is before us today.

The couple of points that I will make might seem like nitpicking, in some respects. I will detail them. It was—I think—the convener who asked a question in relation to the Royal Pharmaceutical Society’s observation that, in your assessment, the cost of each dose that is provided to a terminally ill adult to end their own life would be about £80. The RPS says, however, that it

“is likely to be a huge underestimate of the actual cost for each dose, once all the costs of procurement, storage, facilitation, disposal etc”

are taken into account. Could you use any international comparators to examine that sum, which, on the face of it, seems to be relatively low?

The figure was drawn from international comparators. I read the submission with interest. There are mechanisms at the moment for procurement and disposal, so, in a sense, we would be operating in a system that currently exists. Hiving that off from other aspects of what is done within pharmacy was tricky. It would be helpful to have more understanding of how the Royal Pharmaceutical Society sees that breakdown and how it is an additional cost over and above what could be absorbed in existing structures. I am very happy to engage with it on that point, but it is difficult to comment without having an alternative set of figures and the basis for them.

You would have to ensure that storage places were secure—for example if, in the end, the process did not take place through a traditional hospital or clinical setting—because the substance is potentially very dangerous.

On that point, it is probably worth reflecting that the model that is described in my proposal involves a medical practitioner delivering the medication. Should there be a change of mind, the medication would be returned and disposed of. That might in part be what the RPS is responding on. However, there are other jurisdictions where the medication is mailed out and it is left to the patient to decide when to take it.

Your facial expression was the same as mine was when I first heard that, but it does not appear to have given rise to concerns. In a sense, though, it is a model in which those particular costs are not necessarily incurred. If the society has more detail that it wants to share with me, I will be interested to see it.

12:15  

The Royal College of Nursing suggests that

“The financial memorandum is largely silent on the resourcing implications for nursing, despite the Bill establishing a key role for registered nurses in the process”,

and it goes on to argue for a “dedicated assisted dying service”. Is that something that you looked at? If so, why was it dismissed, and what might it cost if it were the direction of travel?

Having put on the record my gratitude to CHAS, I want to do the same with the RCN, whose insights have been very helpful and constructive. It is right about the involvement of nurses. If we look at the Australian experience over time, we see that nurses have tended to become increasingly involved in the process instead of doctors, and that approach seems to have worked very effectively. I certainly acknowledge that.

I have a difficulty with the idea of a stand-alone service. I think that it is far better for provision to be set in existing health and care settings, for the reasons that I set out about continuity and the pathway of care. We really do not want to take somebody out of such settings and move them into a different pathway at a point when they are, potentially, at their most vulnerable.

A different case has been made about having a so-called opt-in model, rather than an opt-out model, and I suppose that I am more sympathetic to that. If a person can undertake the assessment processes for assisted dying only after going through the training, they would, in a sense, opt out by not going through that training, whether or not they have a conscientious objection. Therefore, there is probably more of a debate to be had around an opt-in model rather than around a stand-alone service, if I am being honest.

As I have said, the safeguards, the transparency and all the rest of it, including continuity of care for the patient, work best if they are seen as being seamless with other forms of palliative, hospice and social care.

Finally, a number of submissions suggest that you have underestimated the overall numbers who will come forward, as others have alluded to, in the early phase. With regard to the 33 per cent in Oregon who came forward but did not ultimately proceed with an assisted death, the Anscombe Bioethics Centre says:

“This figure of 33% does not represent all those who ‘entered the process’, it represents all those who, having entered the process and been assessed and approved have received a lethal prescription.”

Can you clarify the distinction between the sense that we had that one third did not proceed with the process with the fact that many more could be involved in the early phase of assessment but, having received a prescription, might not proceed with taking it?

That 33 per cent is not unique to Oregon. It is made up of those who made the initial request but did not ultimately follow through with it, and some of those people will have had the medication sent to them. However, as I have said, that is not a figure that is unique to Oregon. Indeed, it seems to be pretty consistent; when we were in California in February, people indicated that the figure there was broadly similar. When the witnesses from Victoria and more widely in Australia gave evidence to the Health, Social Care and Sport Committee, they, too, recognised that figure—that is, that a third of those who make an application do not proceed with it. I am not quite sure that I understand the differentiation that the bioethics witnesses are suggesting in the figure that they are talking about.

That is why I was seeking clarification. I think that they are saying that, in Oregon, that 33 per cent figure is for those who receive a lethal prescription then do not proceed with it, whereas in New Zealand and Australian states, for example, all stages of the process are documented, so people are shown as not proceeding in a more gradual way. If this story features quite heavily in the news and if we are in advance of the rest of the UK on this, it might be that far more people than might otherwise be the case will come forward—not in a speculative way—then back out or not proceed. There could be a significant early-stage demand.

As my proposals require a medical professional to deliver the medication, there would be no such instance. If somebody had changed their mind or had lost capacity—indeed, the medical professional would need to determine both capacity and intent at the final stage—the medication would be taken away. I cannot, for no other reason than that, see the situation that has been referred to arising.

That is super. Thanks.

The subject of savings has already been mentioned and I think that there are two short paragraphs about savings in the financial memorandum. I take your point that that is not one of the aims of the bill but, if there are to be savings, presumably they should be in the financial memorandum. I want to explore where there might be savings. One obvious area would be the state pension. If we take the basic state pension figure of around £10,000 a year and we had 400 people ending their lives, that would be a saving of about £4 million for the Department for Work and Pensions.

Over what period?

Over a year.

As I said, the savings that would be made would be specific to each individual’s circumstances. Also, you are presupposing that people who access assisted dying would otherwise have lived on for a further year, which does not tend to be borne out by the evidence. This is an option that is accessed invariably in the final days, if not short weeks—or possibly months—of life rather than years. If we try to calculate savings on the basis of something that will depend on the age of the individual, the treatment that they are receiving and when—and possibly even where—they access it, it is difficult to see how you could come up with a figure.

Many of those who are making the argument about savings most strenuously are simultaneously making the argument that the bill will put untold pressure on the finances and capacity of the NHS and care services, and it seems kind of wedged in between the two.

As I say, it is difficult to see how I could have come up with figures that would have been in any way accurate or subject to a range that would have made them—

Yes, it is difficult, but we have had a similar problem in this committee with a range of bills. I take your point that, normally, the committee is looking at costs perhaps being underestimated and savings perhaps being overestimated, and I am looking at it the other way round. However, we expect to see best estimates in the financial memorandum.

Presumably, there is evidence from around the world. It cannot be proved when someone would have died otherwise, but there must be estimates as to how much before the expected point of death they have died. It seems to me that there would be savings, and that is one of my concerns.

Although I take your point that doctors will not be making decisions or recommendations or giving advice based on financial factors, it is part of the system that we are all in a very cost-driven society. The state pension would be one cost, but if somebody was in hospital, I think that there would be a cost of perhaps £300 a day for being in hospital, so, for a week, we would be talking about a cost of £2,000. Similarly, in a care home, we would be talking about a cost of £6,000 a month, so it would not take very long for some kind of savings to start building up, surely.

The individual circumstances will drive what those savings might be to such a large extent. We do not look at it that way just now in relation to people moving between curative and palliative pathways. The bill is looking to build in something that will become part of the end-of-life options. As I said, it was felt impossible to come up with a figure that would be in any way meaningful. There is not a precedent or a model to draw on.

Even in those jurisdictions where this option has been in place over a lengthy period, there will be differences in terms of pension arrangements, healthcare costs and all the rest of it. However, I am not aware of statistics that show what those savings were. I suspect that it is because they have been redirected into the provision of other care within hospitals or within hospices.

I take that point from the NHS point of view, but in some cases the family or the person is paying the care home fees. That can be around £6,000 a month, or £72,000 a year. An early death could be to the family’s financial advantage, and, sadly, we have known throughout history that some families want their relatives to end their lives more quickly in order to get their hands on the estate. If a person’s estate is going down by £72,000 a year, that is a big incentive for some families to encourage an early death, is it not?

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.

I accept that there are some safeguards in the bill. The concern is that, in legislation in this country and in other jurisdictions, often the initial jump has certain safeguards, and then things get watered down or widened out over time. I accept that you cannot be responsible for that, but the big jump is allowing this at all, and none of us can anticipate whether it will stick firmly going forward or whether it will gradually change. We have to take some of those things into account at this point, as we look ahead.

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.

What about Canada and the Netherlands?

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.

Thank you. Convener, we can discuss that later, but I am concerned that there is nothing in the FM about savings.

I looked at a submission that considered costs in Canada, which suggested that £87 million was the saving in 2022. The population there is eight times that of Scotland, and it also has a different system. In Canada, 4.1 per cent of people had an assisted death, which might give you a ballpark figure.

Good morning—sorry, good afternoon. We have been here a while.

I will return to the timescale in the definition of terminal illness, because I did not quite follow your argument earlier, Liam. You project that the number of people who would choose an assisted death would start off small and then increase. That is based on the experience in Oregon and Victoria, but those jurisdictions have a definition of terminal illness that includes a timescale of six months or 12 months. At any given time, there is only a certain number of people with a terminal diagnosis that would see them likely to die within 12 months. Your proposal does not have that timescale.

My assumption would have been the opposite. If the bill were to pass, in the first year of people being able to access assisted dying, I assume that you would start off with a much larger number, being, for example, people with a prognosis that indicated that they might pass away in the next three to four years but who wanted to access assisted dying in case there came a point when they were no longer able to pass the capacity test. The number would therefore start off larger and might then decline for a couple of years before increasing again.

Will you talk us through why the projections are based on jurisdictions that have a definition that includes a timescale of six months, 12 months or, in another case, 18 months?

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.

I am grateful for that.

I accept that there will be other significant differences in their legislative provisions and in the wider context, but you said that other jurisdictions that do not have such a timescale with regard to the diagnosis have seen a gradual increase in numbers, too. Are there any particular examples that you would cite in that respect, recognising that there will be other important contextual differences?

Most have some sort of timescale. I think that it is 12 months in Queensland, whereas it is six in Victoria. In others, there is a difference between neurological conditions, in which there tends to be a longer timeframe for prognosis, and other conditions.

Are there any examples of other jurisdictions that do not have a timescale but which are still quite similar to what you have proposed with regard to the definition of terminal illness, and which have seen a gradual increase rather than the inverse trend that has been suggested?

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.

I have one other question on that. Correct me if I am wrong, but I think that, in response to the convener’s initial line of questioning, you suggested that, in part, the ceiling on the number of people accessing assisted dying would be the capacity of and constraints on the system and the number of clinicians who are qualified, trained and willing to do it. Given that that is the case across a range of public services and entitlements that people have already, I found it somewhat strange that you were, in essence, arguing that the FM was based in part on an assumption that the system would not be able to meet demand. Will you elaborate on that a little? Is it that it might not be able to meet demand at least in the first few years?

Yes, and that is the point: there is a gearing up. To some extent, it is a question of the time period for implementation. As I have said, there seems to be a wide variety in that respect, with the implementation period ranging from six months to 18 months, two years or more. It will not surprise you to hear that the chief medical officer is keen for it to be at the longer rather than the shorter end, which I absolutely understand.

I am conscious that, if the Parliament were to pass the bill, we would not want to delay it unduly, because I routinely hear stories from people who are desperate for the process to be introduced as quickly as possible. However, I do not think that we do the public or the medical profession any favours by not ensuring that the systems and training and so on are in place as robustly as possible at the point of introduction. Over time—again, this is what has been seen elsewhere—confidence grows among medical professionals to get involved, so the numbers go up. Even if they are not necessarily actively involved year to year, the number of people who are involved in the system as a whole continues to rise, as does confidence among the wider public. However, as much as there is public support for the option and as many terminally ill patients are desperate for it to be available, it is not surprising that some will want to see how it beds in and works in practice before deciding whether it is for them.

I totally understand why, if the bill were to be passed, there would need to be a transition period and a debate about how long that would be. I understand why the CMO, for example, would want it to be longer. However, that line of argument suggests that, at least initially, the system will not be able to meet demand, which would inevitably result in a significant amount of political pressure to increase funding to increase capacity.

Regardless of what anyone thinks of this particular proposal—I am genuinely undecided on the bill at this point—if the Parliament were to pass a law to give people the option of ending their own life, people would have an entirely reasonable expectation that they would be able to choose that option. If they were then to find that they could not choose it simply because the system lacked capacity for them to do so, that would quite understandably result in political pressure to increase funding to increase capacity. That leads me back to the core question on the financial memorandum, which is that costs might increase quicker than is projected, because there will be pressure to meet demand quicker.

That is an interesting argument. Funding can unlock many things, but it cannot unlock everything. The degree to which medical professionals engage with the process might be about workload—for example, we spoke to practitioners in California who limit the number of assisted deaths that they help with or are involved with simply in order to manage their workload. It is not that they conscientiously object some of the time and not at other times.

You will need medical professionals to go through the requisite training in order to be able to carry out the process. That will take time, but their numbers will grow. The question is about the point at which you introduce the service and whether you are conscious of the fact that, although you do not want to delay it unduly, you do not want to go too early when the system is not ready and you do not have enough individuals in the system to provide the service where it is needed.

When folks try to access the service late on, it might very well be that—as we see in other jurisdictions—they pass away before they are able to do so, even where they can access doctors and get the diagnosis and all the rest of it. In other instances, when people have made the application but the palliative care that they receive absolutely meets their needs, the vast majority of people will not access assisted dying; a sizeable proportion of even those who are looking to access it ultimately do not do so, for a variety of reasons. As I have said, funding will not necessarily resolve that issue, although some might make that argument. I do not think that it will make a huge amount of difference in the early stages, because you need time to build confidence and persuade more medical professionals that it is something that they can and want to get involved with.

Thank you very much. That was very useful.

I will probably be quite quick. I have been listening with interest to all the questions thus far, and I have just a couple of questions. First, I want to explore a bit more the extent to which you have considered such a significant culture shift and how risk is managed within it. Earlier, you mentioned a level of peer support for people who are administering it. When people think about being involved in such events, they often say, “If I was to do that, this is how I would behave”, but the truth is that people do not really know. When it is the antithesis of the Hippocratic oath that medical professionals undertake, how they will react remains uncertain. My first question is therefore about trying to put a number on such a significant culture shift, given that antithesis to the Hippocratic oath.

12:45  

Secondly, on risk, we have talked about safeguarding, but we have not looked at it from the point of view that any organisation that is worth its salt would make sure that it buttoned down its processes to protect itself from any kind of legal challenge.

To get both of those areas right could introduce extra costs. We are talking about this as though all things are equal, when it is a dramatic shift for what is quite a small-c conservative country—Scotland. I want your reflections on how actively you have considered both of those elements as part of the financial memorandum.

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.

If you do not mind me saying so, you are almost making my argument for me. My argument is that such a cultural shift will take place. Of course that is happening, but there is a financial cost to it. This is not your bog-standard bill. I am glad to hear that that is happening because it is extremely important but, given that it is happening, the work that will require to be done across the whole range of things that we have covered today will probably be more expensive, because it goes into areas that people might not necessarily have thought about previously. It is quite a big shift.

I can see that there is a cost attached to the time that is going into those discussions and that preparation. It remains to be seen whether Parliament will agree with the general principle that there should be a change in the law and, if it does, what will emerge at the end of that. There is a limit to how much we can prepare for something that we will not see the detail of until some time down the track.

I suspect that, in the medical profession, changes to legislation, best practice or whatever are discussed and pored over on a routine basis. Whatever the cost is, it is likely to be lower if you have prepared and had a chance to discuss it instead of finding that there has been a change in the law or guidance and you are having to react and respond to that from a standing start.

I do not know how to measure that cost. One of the advantages that I have had in developing the bill is that I have been able to have those conversations—I suspect that everybody round this table has had them—with parliamentary professionals, hospices and others with an interest in the issue over the past two or three years, and that will continue to be the case. The fact that that preparation and those discussions are happening is benefiting us, but it is also benefiting those who are most directly affected.

I still think that you are making my point for me. It perhaps goes back to Michael Marra’s observation about a range of numbers.

There is no denying the amount of work that you have put into the bill. We listen to a lot of people presenting financial memorandums, and the only thing that we can be certain of is that they are always wrong, because that is their nature. [Laughter.] What is your best guess—I suspect that your laughter means that you agree with that—as to where your FM is probably wrong, on balance and all things considered? It is okay to tell the committee, because we like that—

Ms Thomson, I have sat where you are in relation to a number of bills and I have happily torn into the FMs that have been presented to us. It is not until you sit down and try to do one yourself that you realise how perilously difficult it is. Even when there are comparator jurisdictions that have passed similar legislation, simply lifting and shifting the figures from those will not work for a variety of reasons. The model of the legislation may be a bit different, the delivery of the health and care system may be very different, or there might be wider differences such as the ones that Mr Mason referred to.

The financial memorandum is a best stab at coming up with figures that are as accurate as I can make them, based on reasonable assumptions. As I said in answers to the convener and Mr Mason, it is an unusual situation for a financial memorandum. If the figures are out—either lower or higher—the cost will go up or down, but the savings that may go alongside that will also go up or down.

Mr Marra’s point about going for ranges is a reasonable one. On reflection, I think that coming up with wider ranges might have been more helpful to the committee and might have reflected the fact that we are feeling our way. As I said, a number of those who responded to the committee made reasonable claims that there is usually an underestimation, but they have not necessarily gone as far as setting out what they think a more reasonable figure would be and what that would be based on.

I suppose that what we have at the moment is the best guesstimate.

I have a point on public support. Many people do not realise that the bill applies only to terminally ill people who are compos mentis. I have had constituents contact me about their granny, husband or wife who has severe dementia, and they think that it is somehow going to apply to them. It is important that we get that awareness out there, regardless of where we go.

I have just one question on an issue that has not been touched on. The issue of unintended consequences was raised on behalf of the hospice sector by Living and Dying Well, which says:

“Unless hospices are ‘AD-free zones’ the public image of the services as death houses is likely to return and with it a fall in donations. Many hospices are already facing serious financial challenges, and this legislation as written risks their funding base falling, which will result in further destabilisation of the sector.”

Will you respond to that?

I think that CHAS also made a point about an organisational opt-out, as opposed to an individual one. I have difficulties with an opt-out that covers an entire organisation, because an organisation is made up of many individuals. This needs to be about choice—not only the choice of the patient but the choice of the individual practitioner not to be involved. That is why the conscientious objection is a key component of the safeguard.

In relation to the hospice sector, I have heard it referred to that there are different views on the matter. Some argue that, in some respects, it opens up potential opportunities for donations in wills and in other ways. However, that is not happening. It is difficult to tell. The reassurance that I tried to give at the Hospice UK conference was that, in places such as Australia and New Zealand, different hospices do different things. There are those that do not provide the service themselves but do not stand in the way of practitioners coming in and providing support to their patients.

A problem might arise if a patient enters a hospice and is not clear on what the policy is from the outset, which could lead to problems further down the line. However, different models of operating exist that allow hospices to try to reflect the views of their staff—those who might be directly involved in the delivery and others who are in a hospice environment, which I recognise is a wider community. That is why, going back to my response to Ms Thomson’s question, I note that the more discussions are happening in that community, the better.

There has been a bit of a perception that the palliative and hospice sector is implacably opposed to a change in the law. I know that many in the sector are, but also that many are not and that others are simply asking questions about the implications of the change for them. It is very difficult to make definitive assertions about what will happen. We do not know whether the bill will be passed or what shape it will be passed in should it get to the amending stages. The fact that those discussions are happening is the only way to provide as much reassurance as possible that issues, whether around funding or staffing, can be addressed.

In response to Mr Marra’s line of questioning, I noted that there is a separate issue around the overall quantum of funding that is going into the sector. One of the benefits of the debate is that it has shone more light on that. What happened back in 2015 was that, as soon as the Parliaments here and at Westminster rejected the bills, that debate disappeared like snow off a dyke. There is a causal link between the debate that we are having around the palliative and hospice care sector’s needs at the moment and the introduction of the bills. I hope that we will pass the bill, but we need to ensure that we do not lose the opportunity to ensure that the Governments here and at the UK level meet the funding needs, whatever they are.

Okay. Thank you for that. Do you want to make any final points to the committee before we wind up?

I think that I have exhausted any and all speaking notes that I might have had, convener. Thank you very much.

Good. I still have a few questions—[Laughter.] Thank you very much for your evidence, Liam. It is very much appreciated. We will consider the evidence that we have received and our next steps in relation to the financial memorandum at a future meeting.

Meeting closed at 12:58.