Chamber and committees

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.

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.

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.

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.

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.

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.

The financial memorandum provides a number of ranges.

I think that that is difficult to predict or anticipate.

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.

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.

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.