Chamber and committees

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 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.

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.

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—

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—

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.

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.

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.

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—

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.