Chamber and committees

I did, because I was aware that it had been an aspect of earlier bills that had come before the Westminster Parliament. However, I was not necessarily convinced that I could see what additional safeguard it would put in place.

The balance is always to ensure that the safeguards do what they are intended to do, and do not simply act as an unnecessary obstacle while not providing any protection. In that context, I understand that the committee that is looking at the bill at Westminster is likely to consider an amendment to remove that provision, although it remains to be seen whether that happens.

Again, I note that I drew a bit of reassurance—as I said to Dr Gulhane—from what the Crown Office said to the committee about the Lord Advocate’s oversight of deaths and assisted dying. That may offer the sort of reassurance that the public might have expected court oversight to provide.

As I said, it remains to be seen whether that aspect remains a part of the UK bill, but I am not convinced of the arguments for introducing it in Scotland, or that it would add anything other than a delay to the process for those who meet all the eligibility criteria.

I was ploughing a lonely furrow at that point. The Isle of Man and Jersey have picked up the pace, and we obviously have seen developments at Westminster.

The argument is not an unreasonable one. Some of the issue is about public awareness, but some of it is about the preparedness of the medical profession to deliver assisted dying. Even though the legislation may be implemented, until the medical professionals involved have the training required in order to deliver assisted dying, it may be more difficult to access over those initial stages.

The issue is about awareness, but it is also about a degree of comfort with the process and not only an understanding of it in theory but an understanding of how it works in practice.

In states in Australia that adopted legislation later on, we have seen that numbers were higher in the first two or three years than they were in states such as Victoria, which were the earliest adopters. However, at that early adoption stage, legislation was in place in other jurisdictions, and I am sure that there were fairly extensive public awareness-raising campaigns.

As such, and as we agreed almost unanimously at the finance committee, predicting the numbers is highly problematic. I have set out my best estimates by drawing on the parallels with Oregon and Victoria, which give us the longest data set to try and base comparisons on.

I would probably question whether it would be competent to do that in the bill. That aside, I think that what might be problematic in the assumption that palliative care is for everybody is that it might almost be seen as a requirement for one to go through and exhaust all palliative care options before one has the right to choose an assisted death.

As I have said, from what we have seen internationally, it is overwhelmingly the case that those who access this choice are or have been in receipt of palliative care. Moreover, the committee heard from the witnesses in Australia that, as a result of the assisted dying legislation, there had, in a number of cases, been a significant uplift in investment in palliative care, too, which, one would hope, would address some of the access issues. Perhaps even more interesting, though, was the improved engagement with palliative care—I think that that was a very clear message from one of the witnesses.

What that reflects is that the discussions that need to take place about the reasons why an individual is making the request—and then the discussion that needs to take place around the options that are available—are leading to people having raised awareness of what palliative care options are available in a way that is perhaps not happening here at the moment. I would expect that to be the case in this instance.

As I say, I think that your suggestion would be problematic. I have been very supportive of your colleague Miles Briggs’s attempts to introduce a bill on the right to palliative care—that is an important campaign, which I have strongly supported. We need to put something in place that is competent and that improves access to palliative care through the debate that is opened up and the pressure that it builds to invest more in palliative care, but I think that amending the bill in the way that you suggest, Mr Whittle, would be problematic in the same way that saying, “You are not able to access palliative options until you have exhausted all curative treatment options,” would be.

That was probably one of the first conversations that I had. The Association of British Insurers has confirmed that assisted dying would not be considered to be suicide.

The issue of language has been at the very centre of this debate. There are those who seek to draw parallels between assisted dying and suicide. In a recent statement, a number of Australian organisations involved in suicide prevention said:

“We are concerned that suicide is being confused with voluntary assisted dying. The two are very distinct, and using the terms interchangeably can be damaging.

Suicide is when a person tragically and intentionally ends their own life ...

Voluntary assisted dying is not a choice between life and death. It is an end-of-life choice available to eligible terminally ill people who are already dying. It offers an element of control and comfort over how they die when death becomes inevitable and imminent ...

Both suicide prevention and voluntary assisted dying are as important as they are distinct. Confusing these terms can delay access to suicide prevention services for people in distress, and complicate care for those who are at end of life.”

I know that you have pursued with previous witnesses the fact that the suicide rate among terminally ill people across the UK is around two and a half times the rate in the population at large. We cannot know the details in every instance, but that does tend to suggest that, in the absence of the option that is reflected in my bill, many people are taking matters into their own hands. Meanwhile, others who have the financial wherewithal and physical capacity to access the services provided by Dignitas in Switzerland are doing so, but probably weeks or even months ahead of time in order to ensure that they have the physical capacity to do so. Even then, those individuals are not able to seek the support of medical professionals or even family members, for fear of exposing them to the risk of prosecution.

I understand why there is a concern about normalising this approach to death, but we are talking about people who are dying anyway, and this is about their choice, dignity and control regarding the timing and means of their death. It is not about suicide, which is a very different issue that must be tackled differently.

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.