Chamber and committees

As I said, the number of those who are likely to take up the option of assisted death in the initial years is likely to be fairly low—we have certainly seen that pattern in other jurisdictions. The information that we have on who accesses it, when and how and so on, will, therefore, be more limited than one would expect in later years. However, it is important that we capture information from the get-go, so the annual reporting requirements will kick in for year 1 to ensure that the Government and relevant bodies, and the Parliament, understand what is happening.

I know that some concerns have been expressed as to whether a five-year review is too far down the line; some argue that a three-year review may be more appropriate. There is a balance to be struck in that regard. I understand why there may be a desire to ensure that any changes that might be needed can be taken account of as quickly as possible. However, if we do not have a detailed data set on which to draw, we, as parliamentarians, will find it more difficult to make a decision, informed by those in the field, about how the legislation is working and whether and where amendments might be required.

A five-year review seems to me to strike the right balance in order to give us the data set while ensuring that there is an annual reporting system in place that can pick up things in real time.

It would certainly be an option for the Scottish Government to add additional requirements on data gathering. I have sought to set out the data that, on the face of it, looks to be the most relevant, and what I have set out certainly reflects what the data-gathering processes look like in other jurisdictions. However, if the Government or stakeholders that are informing the Government feel that other elements need to be added, there is a mechanism for doing that.

As with any data gathering, there needs to be an understanding of why something is being added to the list. Such processes are not without time and cost implications, so we need to understand the purpose for which we are gathering data.

However, as I said, the data would need to be as comprehensive as it could be in order to give the clearest possible picture of how the legislation was working in practice and to inform any future decisions about how the legislation might need to be adapted.

It is as you say, Dr Gulhane; that concern is very often raised. It is important that we avoid seeing the issue as a zero-sum game or an either/or choice. We need more investment in palliative care, particularly around access. There will always be improvements to palliative care that we will want to make, but the issue that arises more often than not is about access rather than quality.

There is also an issue around understanding that palliative care is not just at the specialist hospice end; it is more often delivered by doctors and nurses in other settings. It has been clear from the debate around my bill, and the overall debate around the health and care service, that the needs of palliative care are given less attention than needs in other parts of the health and care set-up. You can perhaps see why that is the case, given the pressures in other parts of the health service. One of the real positives about this debate is that it has shone a light on those issues, but it is not an either/or—we need both.

In the jurisdictions around the world that have a terminal illness model, and in the states in the US and Australia where a similar model has been introduced recently—this holds true for the more expansive models—the vast majority of people who are accessing an assisted death are in some form of palliative care or have had access to such care.

That demonstrates that those are people who have, to their mind, exhausted what palliative care can provide for them, and that accessing an assisted death is the choice that they opt for at that point. The most recent figures in relation to Oregon are that around 90 per cent are in receipt of palliative care or have had palliative care. In Victoria and Queensland in Australia, the figures are north of 80 per cent. Again, the picture is fairly consistent.

We need to improve access to palliative care. The debate around the bill has provided a platform for people in the palliative care sector to make that argument, but I caution against seeing it as an either/or choice, because, overwhelmingly, people who are accessing assisted dying in other jurisdictions with either similar models or other types of models are often in receipt of the best palliative care.

As palliative care practitioners would acknowledge, palliative care can do wonderful things, but it cannot always meet the needs of people with a terminal illness, and that is reflected in the figures.

We have both been involved in politics for long enough to know that predicting what individuals will seek to legally challenge is very difficult. However, like you, I was reassured by the responses from the Crown Office and Procurator Fiscal Service and Police Scotland on those provisions in the bill.

We touched on coercion earlier. Having spoken to practitioners and those who are involved in the oversight of such legislation in Australia and the US, I know that they consistently argue that the greater concern is not family members coercing somebody into assisted dying but family members having difficulties with the decision that a relative has taken to opt for that choice. That points to the concern that you have raised, and it is why the safeguards and procedures that will be in place are as robust as they are. First and foremost, they will provide protection for the patient, but there will also be robust safeguards for medical practitioners who operate in this area.

We wrestled over the bill’s phraseology. It is difficult to capture the discussions that take place between a patient and family members, because families operate very differently. A requirement that a discussion takes place with the family could be highly problematic, because family members might be estranged from one another, for example.

However, in order to manage the process, including the process of grieving after the death, clearly, the more discussion there is—either with the family or with the support network around the individual—the better. That would certainly be the expectation. I would expect medical practitioners to give that advice to their patients. The more such conversations take place, the more we will minimise the risk of family members feeling that the process is not robust or even feeling blind-sided by the decision that a relative has taken.

My first observation is about the jurisdictions that have a similar model in place for assisted dying, terminal illness and capacity. Broadly speaking, we can see the conditions that patients who access that provision tend to have, and the expectation is that that would be replicated here in Scotland, and I do not think that it would be much different in England and Wales.

As I said in my opening remarks, the expectation is that there would be a requirement for the terminal illness to be advanced and progressive, so that the patient would not recover. I think that medics are used to making that diagnosis and are comfortable with it. There would also be a requirement that the diagnosis would be made by not one but two medical practitioners, which provides an additional safeguard. Over and above that, where there is any dubiety or any question in the mind of either practitioner, there is an option to refer that on to a specialist in that area of medicine.

Regarding the terminal illness diagnosis, conversations with stakeholders and observation of what happens internationally suggest that that might be more about the assessment of capacity, so the onward referral will, again, be an important safeguard and will give confidence that the terminal illness assessment is robust and thorough and that it provides the protections that patients and the wider public would expect.

You have summed it up well. You can make a strong argument for both 16 and 18, and the rationale for opting for 16 was on the basis of that being the age of adult capacity for making medical decisions. People who are 16 are deemed to have the capacity to make decisions about their treatment. There is a logic for 16; it is a very defensible case.

That said, I have heard the evidence that the committee has taken in relation to the case for 18. In other jurisdictions—whether in Australia or some of the US states—18 is the age at which an assisted death can be accessed, and the Terminally Ill Adults (End of Life) Bill that has been introduced at Westminster has a similar age limit.

It is an area on which I am keen to reflect further should the bill pass at stage 1 and as we look ahead to stage 2. As I say, I have taken cognisance of the evidence that the committee has heard, and the arguments for setting the age level at 18 are persuasive. The reason for opting for 16 is that that is the age at which individuals are deemed to have capacity to make a range of decisions in relation to their care and treatment.

There would absolutely need to be further engagement.

I would observe that the Children and Young People’s Commissioner Scotland has taken a close interest in the issue—in fact, successive children’s commissioners have done so and have expressed views. The Scottish Youth Parliament has had campaigns in support of a change in the law over successive sessions of that Parliament. The issue clearly engages younger people. It is often assumed that the issue kicks in solely for people later in life, but that is absolutely not the case.

You will probably see in the written evidence that you have received—I certainly saw it in the response to the consultation that I issued—that young people have very clear personal experience to draw on, often of older family members who have perhaps gone through a bad death, so they feel very invested in this. Therefore, if the age limit was to change, that would need to take account of any concerns that younger people might have.

The only other thing that I would add is that the numbers that are likely to seek to access an assisted death in any given year will be relatively low. I would have said that it would be around 1 per cent of the overall numbers who die in any given year. Therefore, the numbers at the younger end of the age spectrum will be exceptionally low, possibly even zero in a given year. That is not to say that it is not important to take those views into account, and I am very cognisant of some of the concerns that Children’s Hospices Across Scotland—CHAS—has raised with the committee. However, it is important to emphasise that the numbers involved are likely to be exceptionally low indeed.

Again, it is probably more appropriate to pick that up in guidance. On whether there would be an expectation that somebody in that position would refer the individual to their GP to seek support, that would seem to be the most logical option in those circumstances. That would be difficult to express in the bill, so it would be better for it to come through less in secondary legislation and more in guidance.

As I mentioned earlier, there will be training requirements for those who are directly involved, but there will be a wider training requirement with regard to raising awareness of what the change in the law means among those who are involved in health and care more generally. With regard to whether someone has a conscientious objection, it would be in their interests to understand the implications. However, as I said, that would probably be better expressed in guidance than in the bill.

I think that that would come through guidance. I can understand the committee’s frustration in wanting to understand with real clarity how the model would work in practice. Some elements can, and absolutely must, be expressed in the bill itself, but the committee will understand from this and other bills that some elements are more appropriately covered in secondary legislation, recognising that they will almost certainly need to be frequently reviewed, revised and updated.

A great many more aspects will probably need to be reflected in guidance from professional bodies, regulators and others. That is the appropriate way to take the proposal forward, I think. However, I entirely understand why there is a desire to see as much detail as possible in the bill, and I sympathise with that. I hope that I have provided that detail as far as I can in the bill and in the supporting documentation—the explanatory notes and the policy memorandum—where I have sought to flesh things out. Ultimately, you are right: some elements will have to await guidance. I think that that is a reassurance for patients and medical professionals; that is absolutely where things ought to be.

Was that okay?