Chamber and committees

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.

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.

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.

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.

That is not something for which my bill can legislate—

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.

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 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.

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 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.

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.