Seòmar agus comataidhean

Thank you, convener. I apologise for the state of my appearance. When cycling to the Parliament this morning, I hit a pothole and the bike went from under me—that is not an attempt to play the sympathy card with the committee, but it is certainly a reminder of the value of wearing a cycling helmet.

I will start by declaring 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. That support is currently for one day a week. The Humanist Society Scotland also funded the development, maintenance, domain cost and hosting of a website that I have used to publish materials relating to the bill, and Dignity in Dying paid for the costs associated with my visit to California last year 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. I refer members to my entry in the register of members’ interests for further details.

I introduced the Assisted Dying for Terminally Ill Adults (Scotland) Bill in March last year, following the usual member’s bill process and supported by the non-Government bills unit. The bill’s aim is to allow mentally competent terminally ill adults in Scotland to voluntarily choose to be provided with assistance by health professionals to end their own lives. It sets out eligibility criteria and processes for assessment, all of which contain, I believe, appropriate safeguards. The bill also includes requirements for data gathering, reporting and review.

The bill is the culmination of years of campaigning and work by individuals and organisations, including current and former members of the Parliament. Proposals and bills were previously introduced on the issue by Patrick Harvie, the late Margo MacDonald and Jeremy Purvis. I thank all those who have been involved in seeking a change in the law on this issue and who have supported me.

I am acutely aware of the weight of responsibility that comes with leading a bill on this issue, and of the responsibility that rests on every MSP. We owe it to our constituents—whatever their views—to consider and debate this issue thoroughly and respectfully to ensure that any bill that is passed is appropriate, safe and fit for purpose. I know that that responsibility is one that the committee has taken seriously, and I thank you for your detailed and robust scrutiny to date.

I appreciate that the committee has faced difficulties in taking oral evidence from people who will be most directly affected—that is, those with a terminal illness. However, I know that a large amount of powerful written testimony was received in response to the committee’s call for written evidence and in response to my consultation in 2021.

As members will be aware, the fundamental reason why the bill is before the Parliament is a belief in the need to give terminally ill adults more choice and control over their end of life and the means of avoiding the existential pain, suffering and symptoms that are often associated with terminal illness. It is worth emphasising, however, that the bill’s provisions will relate to a relatively small number of people each year.

I have paid close attention to the evidence that the committee has received. I have heard the support that has been expressed by many witnesses and I have also listened carefully to the concerns that have been raised by others. I am aware of areas of the bill that have attracted particular focus, such as the age at which assistance can be accessed and how capacity should be defined and assessed. I will continue to listen to views on those points and to consider whether the bill requires amendment.

Another area of focus has been the definition of terminal illness. The bill requires a person to have an illness, disease or condition that is worsening, that will continue to worsen, and that is at an advanced stage. The illness must be one that a person will not recover from and that is expected to result in their early death.

I do not believe that the definition should include reference to a prognosis period, and no strong case has been made for that. I remain confident that the definition gives clear effect to the policy intent, which is to capture terminally ill adults in the final stage of their illness.

I also listened carefully to views about the assessment process, and believe that the safeguards in the bill are sufficiently robust: a person must be deemed eligible by two doctors acting independently, and both doctors will be able to refer to specialists for their views on that particular terminal illness and on capacity. Involving other relevant practitioners, where appropriate, is also an option.

Regarding the end-of-life process, my policy is that the life-ending substance must be self-administered. I acknowledge that there have been some concerns about that but, as the committee has also heard, a variety of options may be available to support self-administration.

In all those areas, the approach that I have taken has been to achieve what I consider to be an appropriate balance between ensuring access to assistance in a timely fashion, within a manageable process, and ensuring that appropriate safeguards are in place to protect people—including those who may be vulnerable—as well as to respect the right of practitioners to choose not to participate.

I do not underestimate the sensitivity of the issue or the significance of making the proposed change. However, as the committee has heard—and given what we know about the experiences of those who endure a bad death despite the best efforts of palliative care or of those who feel forced to take matters into their own hands—doing nothing and keeping the status quo has consequences. We can, and must, do better, and the bill provides us with an historic opportunity to do so. I thank members for their patience and look forward to answering their questions.

The perception that those in the disability community are overwhelmingly opposed to a change in the law is not borne out by the evidence that the committee will have heard from Professor Colburn at the University of Glasgow. His fairly comprehensive research points to attitudes in the disability community and the international evidence on how assisted dying is accessed. Polling consistently shows that support for a change in the law to allow for assisted dying is every bit as strong among those in the disability community as it is in the population at large, at the mid-to-high 70 per cents in the main.

I understand the concern that people in the disability community often feel that their lives can be devalued, that access to the rights that they have is not realised consistently or that there are rights that they still do not have. I stand in solidarity with them with regard to improving that situation, but we do not improve it by denying terminally ill adults the right to an assisted death when they choose it. It would be wholly intolerable for somebody with a disability who had an advanced progressive terminal illness and mental capacity to be denied the same access as an able-bodied person to the choice that is set out in my bill—people in the disability community would rightly be up in arms in such an instance.

All I can do is offer the reassurance that having a disability alone does not make you eligible to access an assisted death—you need to have an advanced progressive terminal illness and mental capacity in order to be able to do so. If you have a disability as well, I see no reason why you should not be able to access an assisted death in the same way and, if further support is needed in order for you to be able to access it, so be it. As I have said, I think that the disability community broadly recognises that, which is why polling consistently shows very strong support for a change in the law.

I was interested in those exchanges. To go back to Ms Mochan’s questions, I note that that element might well fall more appropriately into guidance. However, the self-administration element is an integral part of the process.

It is worth reflecting not so much on the differences between the bill that I have introduced and the bill that is being considered by Westminster but on the fact that, in other jurisdictions that have similar legislation, very often, the medication is dispatched to the patient and the medical professional is not present when the medication is delivered.

I am happy to look at whether further refinement of that is necessary. It is an important safeguard that the medic is there, not least to ensure that a final assessment of capacity and intent is made.

There is a feeling that an individual may wish, in their final moments, to have a degree of privacy. How you manage that while ensuring that there are safeguards is probably a question to reflect on further. As I have said, the safeguard that is in the bill seems to be robust; it is absent from other jurisdictions, which does not seem to be a problem, but that is for those jurisdictions, rather than me, to justify.

In relation to interaction with UK responsibilities, the other matter, which gains less attention than the medication, is that of the regulation of professional bodies. However, similarly, that would need to be addressed in order for the fully functioning process of assisted dying to be put in place. That is not to say that the bill as it stands is not competent or that it cannot go through the full scrutiny process and be passed by the Parliament.

I can understand why the committee, MSPs, the wider public, and those with an interest in the matter are keen to have a clear understanding of how the powers are to be exercised. That would give us confidence as to how the bill would work in practice. I do not know whether Dr Ward wants to add anything on the specifics of the regulation of professional bodies.

I do not think so. It is difficult to know on what basis I would try to develop a different approach to the financial memorandum. Earlier, we discussed whether it would be an opt-in or an opt-out model, which I can see having a sizeable bearing on the costs. However, on the basis of assessing the likely take-up and the associated costs, recognising that we are talking about patients who are going to be in the health system already, we are talking about a lot of the training being training that is already routinely delivered. It might need to be adapted, but it is certainly not a case of a standing start. It is also fair to say that there will be training models and modules that are available in other jurisdictions that would help to inform the training.

You cannot have a lift-and-shift approach, because the health and care system here is very different from those in Australia and the US, but at least they provides pointers to how you would deliver this. As I have said, I think that the financial memorandum remains a reasonable assessment of the likely costs.

You make an entirely valid point, Ms Harper. In jurisdictions with a terminal illness mental capacity model, it is pretty consistent across the board for around a third of those who apply for an assisted death to not end up taking it. It is fairly safe to assume that, in the main, that is because they find that the palliative or other care that they receive meets their needs all the way through to death.

I suppose that it was implicit in my quote from the woman with MND that it is about having the insurance policy of knowing that, if things get too much, the option of an assisted death is available. That, in itself, has a palliative benefit, because it provides a degree of reassurance. It allows the individual to get on with living their life and making the most of whatever time is still available to them, whether that is measured in years, months or days. The fear of what is to come cannot be overestimated. Whatever the physical aspects are, the existential suffering that those at the end of life go through is one of the worst aspects.

As you will know better than I, Ms Harper, pain management is pretty sophisticated. A lot of the pain can be managed. I have heard physicians in Australia say that they very rarely deal with issues of pain. It is the existential suffering that leads individuals to opt for an assisted death. The fact that such a high number of people make the choice but then do not go through with it indicates why it has been chosen and the benefits that come with simply having that insurance policy in the background.

I have been interested in those surveys. Going back to the response that I gave about how many people are likely to be involved in the process, as we see from jurisdictions with similar models, it is a relatively low number. It is likely to be a very low number in the first and second years, but over time, it is likely to increase.

At the end of last year, I spoke at the Hospice UK conference in Glasgow. It was clear to me from the exchanges there that there is a considerable amount of discussion and debate about the issue in the palliative care sector. There are certainly people who strongly oppose a change in the law, and people who are similarly strongly in favour of it. A great many people have questions and simply want to know how it would impact on the care that they deliver to their patients. As I said to them, I think that introducing the choice of an assisted death as one of a range of end-of-life choices allows them to do what they do well, which is meet the needs and limit the suffering of the people they support.

Attitudes to legislation before it is in place often change, and can change dramatically, after the legislation is introduced, when people have a clearer understanding of what the implications may be. I do not see any reason why the situation here in Scotland would be any different from that in states in Australia and the US where practitioners have engaged in the process and, as I said, have often found that one of the most rewarding things that they are able to do is give those whom they are supporting a good death. That seems to be at the heart of what palliative care is about.

I have heard the concerns, and I have tried to do my best to engage with the sector to provide a degree of reassurance. Obviously, the bill, which includes a conscientious objection clause, does not compel anybody to engage with the process, but I am confident that there will be sufficient doctors to support it. As I said, those numbers are likely to increase over time as understanding and confidence increase and as the training is rolled out to practitioners.

That evidence was very interesting. It is also fair to say that the BMA and the Royal College of GPs seemed to be fairly relaxed about the way in which that part of the bill was expressed.

I recognise that this is an element of the bill on which the detail is probably more appropriately set out in secondary legislation and in guidance. Training would be required for doctors to undertake the work that is involved in providing support to patients around assisted dying—we touched on some of that earlier.

As it stands, the bill probably goes as far as it can in expressing who is likely to be involved in this process, but there is an opportunity there. My expectation is that the Government would work with the professional bodies to identify how best to express that through secondary legislation and guidance.

That would certainly be my view; I am conscious that others take a different view on that. I think that there is a way of ensuring that the information that is needed is captured appropriately.

As I said, I was reassured to some extent in my discussions with the CMO and his colleagues that there is a way of navigating the matter so that it is undertaken sensitively but makes absolutely sure that the relevant information is available so that we have the understanding that we need about how the legislation is working in practice.

The slippery slope argument is made consistently. I point the committee to the report published by the House of Commons Health and Social Care Committee in February last year, at the end of an 18-month inquiry into assisted dying and end-of-life choices, which concluded that there was no international evidence of a jurisdiction that has introduced a terminal illness mental capacity model that is similar to the one that I am proposing and that is being considered by Westminster, where the eligibility criteria have changed. That was confirmed in the evidence that the committee heard from the witnesses who are involved in the process in Australia.

The argument that one of the witnesses made to try to substantiate the claim of a slippery slope in Oregon is that different conditions among those accessing assisted dying were featuring to a greater or lesser extent, but that does not necessarily say anything other than that patient confidence and medic confidence in the procedures perhaps evolve over time, and that those with certain conditions find that the palliative care that is available meets their needs up to a point, but they find themselves beyond that point at a certain stage.

Although minor changes have been made to the residency requirement in Oregon—over the years it was found that the requirement did not provide any meaningful safeguard, so it was removed—the eligibility criteria on terminal illness and mental capacity have not changed.

I have always acknowledged that the models in Canada and the Netherlands are more expansive; they have always been more expansive models. In the Netherlands, that has been the case for many years.

The Canadian model, which is often cited, has evolved through court process, which is sometimes brought into the debate here as something of a risk, but the constitutional arrangements in Canada are very different from those in Scotland and in the UK. The legislation was introduced as a result of a case that was brought before the supreme court in Canada on the basis that the ban on assisted dying was unconstitutional. The Parliament then introduced legislation, which was not felt to go far enough, so it was then legally challenged on appeal, which was upheld, and the scope of the legislation was expanded.

The arrangements in Canada and the Netherlands, both of which enjoy overwhelming public support, are very different from what is being proposed here. As I say, there is no example of a terminal illness mental capacity model having been introduced, whether in the US, Australia or New Zealand, where the eligibility criteria have changed.