Seòmar agus comataidhean

I begin where I concluded at the last meeting by reminding the committee of my declaration of interests. I am supported by Dignity in Dying Scotland, Friends at the End, and the Humanist Society Scotland.

With regard to Jackie Baillie’s amendments 54, 55, 57, 64 and 61, I wish to express in general my support for any work that is undertaken to assess the status of palliative care, hospice and end-of-life services, and anything that seeks to support such services. With regard to the potential impact of the bill on palliative care, I again refer to the report on assisted dying that was published by the House of Commons Health and Social Care Committee just under two years ago, which concluded:

“In the evidence we received we did not see any indications of palliative and end-of-life care deteriorating in quality or provision following the introduction of”

assisted dying. It went on to say that

“indeed the introduction of”

assisted dying

“has been linked with an improvement in palliative care in several jurisdictions.”

Amendment 54 would require the Scottish ministers,

“as soon as reasonably practicable after Royal Assent, to carry out an assessment of”

and publish a report on

“the likely impact of the provisions of this Act on hospices and providers of palliative and end of life care services.”

Amendment 57 would require the review of the act to set out the impact of the act on hospices and palliative care providers.

An assessment of the likely impact of the act may be difficult at such an early stage but, from my engagement with Hospice UK and Jackie Baillie, I understand and am sympathetic to amendment 54. On amendment 57, I believe, and evidence suggests, that the bill will not negatively impact palliative care, hospice and end-of-life services. However, the existing provision requiring a five-year review of the operation of the act is intended to deal specifically with the function of the act—in other words, supporting terminally ill adults in being lawfully provided with assistance to end their own lives. The bill also provides that any concerns with the operation of the act that have been raised must also be covered in the report, alongside the Scottish Government’s response. That would allow for any concerns about palliative care, hospice and end-of-life services in relation to the act to be raised and reported on and for a response to be provided.

I am mindful that amendment 57 would add aspects that are not directly related to the legislation to the review of assisted dying legislation. Bringing in other matters may risk diluting the review process. I am also mindful that amendments 54 and 57 duplicate each other to a certain extent. I note the Scottish Government’s view:

“From a delivery perspective, it would be challenging to measure the impact of the Act on hospices and palliative care.”

It notes that that would be reliant on data from Public Health Scotland that it does not currently collect in the necessary manner. Furthermore, the Scottish Government adds that

“if any data collected were to show changes in relation to hospices in and palliative care, it may not be possible”

to attribute those changes to the act

“rather than other factors such as delivery of actions outlined in the Palliative Care Strategy Deliver Plan, the ageing population in Scotland, changes in the palliative care workforce, etc.”

Amendment 61, which seeks to prevent the substantive provisions of the act being commenced by the Scottish ministers until they publish a report as outlined in amendment 54, could delay implementation, even though all necessary measures are otherwise in place. Therefore, it would prolong suffering for people with terminal illnesses who wish to access the choice.

As I have said about other similar amendments, the bill provides for the Scottish ministers to commence the substantive parts of the bill by regulation. The Scottish ministers will have the necessary oversight, and I expect them to commence the various substantive parts of the act only once all relevant health, social care, social work and other services are appropriately prepared and all necessary measures are in place to allow assistance to be requested and provided in that way. Singling out in statute particular steps that must happen before the act can be commenced risks undermining that process and potentially delaying the availability of assistance for those who wish it.

Yes, certainly.

On the specific instance in New South Wales that Sue Webber has raised, I have always argued that seldom is an increase in budget, were it to happen, a part of the legislation. That sort of thing tends to come in a separate decision taken by the Government or the Parliament.

The debate around my bill has allowed more of a debate on palliative and hospice care, and I very much welcome that. Ultimately, any additional resource that is delivered to the sector will come through budgetary decisions by the Scottish Government and this Parliament. Those of us who believe that additional resources are needed must continue to make that case, and we can make it on a cross-party basis—with an election forthcoming, I dare say that it will feature fairly prominently in the manifestos of each party. However, it will be delivered through a budgetary process rather than through the legislation.

The point that I was making, and the conclusion that has been reached by the Health and Social Care Committee in the House of Commons, is that no evidence has been seen of a deterioration in the delivery of palliative and hospice care. Indeed, in many instances, there has been an increase in not only the budget for but the quality of the engagement with palliative care, which the committee heard in evidence at stage 1, too. That has arisen from the processes put in place for those accessing assisted dying, who need to have discussions with medical professionals about all the options available to them. Too often, palliative care is not necessarily understood as well as it might be.

Do you want to make another intervention, Ms Webber?

That is on us, Ms Webber. If we want to prioritise palliative care, there is an election coming up and each of us can make manifesto commitments. My point was in response to the earlier comment about a budget reduction in New South Wales, presumably by the Government in New South Wales.

I understand the rationale; I even understand the rationale for setting the timeframe at two years. However, I go back to the point that the five-year review of how the act is operating sits alongside a requirement for the annual reporting of figures in relation to the number of people accessing assisted dying. The Scottish Government, Public Health Scotland and future committees of this Parliament will have oversight of that reporting.

We also had evidence from the Crown Office at stage 1 about the interest that it will take in each and every instance of an assisted death, certainly in the first five years. The regulatory professional bodies themselves will also take their own interest in what is happening and in how it is happening. I do not think that consideration of the act is solely reliant on the review.

There is a need for a wholesale review of how the act is operating in practice; that is required. However, as I said, there is a balance to be struck in relation to when we hold that review so that we have sufficient data to make informed assessments of what is happening without leaving it too long. The public need to have confidence that a weather eye is being kept on a process, which, I fully accept, is a new one.

I thank both Ross Greer and Miles Briggs for very thoughtfully setting out the thinking behind their amendments. I found myself nodding along to much of what they had to say. I may turn to their amendments after addressing my own.

My amendments 44 and 44A would require the Scottish ministers to make information available about the lawful provision of assistance, in an accessible and understandable format, to terminally ill adults, to health, social care and social work professionals, and to the wider public.

Section 23 of the bill allows ministers to prepare and publish guidance on the bill. Section 23(2) sets out the particular guidance that may be included. Having given further consideration to the issue during and since stage 1, I believe that that guidance should be strengthened and that there should be a stand-alone requirement for the Scottish Government to ensure that all relevant persons—terminally ill adults, medical, social care and social work professionals, and the general public—have the information that they require made available to them. That may, for example, be via a website that provides information, as well as a central contact point where inquiries can be made and information signposted.

Amendment 44 relates to my amendment 27, which requires a registered medical practitioner who is approached by a terminally ill adult who wishes to make a first declaration, but who is unable or unwilling to assist, to direct the person to a practitioner who may be able to or be willing to assist, and to a source of relevant information. Amendment 44 ensures that such relevant information will be available in an accessible and understandable format and can be easily pointed to by the professional.

I turn to the other amendments in the group. First, Miles Briggs’s amendment 197 would require the Scottish ministers to make regulations to provide for an independent service that would provide information and support to those who may seek assistance and, where requested, to support a person in navigating the process. I was interested in the exchanges with Patrick Harvie, because one of the issues that I too wrestled with was the extent to which that would be about the provision of information and the extent to which it would be about providing advice and guidance, which may be more appropriately picked up in the amendments that Ross Greer lodged earlier around advocacy. Miles Briggs’s amendment 212 would require such regulations to be subject to the affirmative procedure. I think that my amendment, combined with Ross Greer’s amendments, perhaps address that sufficiently. However, if there are gaps in provision following today’s votes, I will be happy to work with Miles Briggs on those.

Jackie Baillie has not had a chance to speak to amendment 56, but I will offer some thoughts, and will respond in due course to what she says. I note that section 23 of the bill allows the Scottish ministers to make guidance relevant to the bill’s provisions and, in particular, allows for guidance to be made about the assessment process, which includes determining that an adult has a terminal illness in line with the definition in section 2. It is further expected that organisations such as the GMC will issue guidance relating to some of the clinical aspects of the bill, such as the terminal illness definition. I hope that, on that basis, Jackie Baillie feels that the bill already covers the issues that she has raised. She is shaking her head, so that hope has been frustrated.

Miles Briggs’s amendments 261 and 262 would amend section 23, so that the Scottish ministers “must”, rather than “may”, prepare and publish guidance on the act. Although I do not foresee a situation in which ministers would not issue guidance where there is a clear need to do so, I have absolutely no objections to those amendments.

Ross Greer’s amendment 263 would provide that the guidance that is provided for in section 23(2) of the bill may include provision on training and quality assurance to ensure the effective implementation of the act. I note that the list that is provided in section 23(2) of areas on which ministers may bring forward guidance is not intended to be exhaustive and that there is nothing to prevent guidance on training and standards being issued. I also note that, if Ross Greer’s amendment and those of Miles Briggs are agreed to, such guidance would be required, rather than being at ministers’ discretion. I also consider that the GMC and other professional bodies will have a role here. All that said, I have no objection to amendment 263.

I turn to amendments 264 to 268 and 278, lodged by Miles Briggs, Ross Greer and Paul Sweeney.

Miles Briggs’s amendment 264 would provide that the guidance should also set out

“how the provision of assistance to terminally ill adults in accordance with this Act should be arranged by Health Boards, including the development of patient pathways”

and

“where legal and professional accountability lies in relation to the provision of assistance”.

Miles Briggs’s amendment 266 would provide that the guidance in amendment 264 relating to legal and professional accountability should be developed in consultation with and approved by the Lord Advocate. I have no objection to the first paragraph of amendment 264, but I am wary about stipulating where legal and professional accountability lies. As with other amendments in the group, professional bodies will have a role in providing guidance and there may be a risk of duplication or confusion. That was acknowledged by Miles Briggs in relation to the acceptance by the RCN. Although there are challenges here, that is not to say that they cannot be addressed. However, I thought that it was important to flag that to the committee.

The bill requires ministers to consult with relevant persons when preparing guidance and Miles Briggs’s amendment 265 adds to that by requiring consultation with relevant trade unions and professional bodies. Again, I am not opposed to the amendment, but I draw attention to the existing requirement in section 23(3) for the Scottish ministers

“to consult such persons as they consider appropriate.”

I cannot foresee circumstances in which ministers would not consult such bodies.

Section 23(4) provides that a person carrying out a function under the act “must have regard to” the guidance. Ross Greer’s amendment 267 would add to that by requiring that a person

“who is otherwise involved in the process”

by which a terminally ill adult requests and is provided with assistance must also have regard to guidance. I think it likely that the provision as drafted would ensure that everyone who is involved in the requesting and provision of assistance, who would need to follow guidance from ministers, would be covered, meaning that the amendment is therefore not essential, although, once again, I have no strong objection to it.

The situation with Paul Sweeney’s amendments is the same as the situation with Jackie Baillie’s. I have yet to hear him speak to them, but I will offer the following thoughts in relation to his amendment 268 and consequential amendment 278. Amendment 268 would require ministers to

“prepare and publish guidance for coordinating registered medical practitioners and authorised health professionals”

regarding

“the provision of assistance under section 15.”

Amendment 268 also sets out what should be included in that guidance and would provide that ministers must consult such persons as they consider appropriate and that those carrying out functions in relation to section 15 must have regard to the guidance. That guidance should also address

“the management of cases where a terminally ill adult has used the substance, but has ... not died within a reasonable period”.

The amendment would also require ministers to set out in regulations what is meant by a “reasonable period”.

I believe that the existing guidance provision in the bill, which makes specific reference to the section 15 provisions regarding the use of a substance, is sufficient and I have some concern, as I have said in debates on previous amendments, about including a reference to a “reasonable period” in statute. I appreciate that there is a sizeable list on the agenda for my further discussions with Paul Sweeney ahead of stage 3, but at the risk of overloading it, I will add that issue to it.

I conclude my remarks, convener, by offering further thanks to the committee for its painstaking work. It has allowed detailed scrutiny and probing of a range of issues that were raised at stage 1. I know that it has been a pretty herculean task, but I thank you very much for your forbearance, not least in allowing me far more time than you probably felt was necessary.

I agree entirely with the point that Stephen Kerr makes. In relation to the five-year review, there is a balance to be struck about the timeframe within which sufficient data can be gathered to make informed decisions about the way the act is operating: whether it is performing as intended, who is accessing it and for what reasons, what the experience is of medical professionals who are engaged with the process, and so on.

There is always going to be a balance—I recognise that. However, alongside that, there is also the requirement for annual reporting of data. As I said earlier, future health committees can look at the data annually and take evidence on it as required. I think that it is problematic to set on a two-year time horizon a full-scale review of how the act is operating in practice, not least because of what we know from other jurisdictions that have implemented similar legislation, which is that the number of people who access it in the early years is relatively small. It takes a number of years for the number to increase, and then even out.

There is a balance to be struck in relation to when we carry out the review. However, I have concerns that doing so after two years would leave a data set from which some erroneous conclusions could be drawn about the way the act is operating in practice. As I said, the review also sits alongside the annual reporting requirements, which provide sufficient safeguards to address the concerns.

Very briefly, yes.

I can respond to your questions, Ms Webber, or you can continue to intervene.

The point that I was making was in response to your point about the budget allocation in New South Wales, which was a Government decision. If there is a feeling that the hospice sector—or indeed palliative care more generally—requires more resources, that is an argument that we can make. As I have said, it has been encouraging over the past two or three years to see not only the profile of the issues going up but more of a cross-party endeavour to highlight them and to press for additional resources.

As I have said, on the last part of amendment 23, it is not clear how the methodology would show a direct correlation. As sympathetic as I undoubtedly am to the arguments that have been put forward, I ask members to reflect on the extent to which the bill is the most appropriate place for the sort of process that amendment 23 sets out. Certainly, the first two parts of it seem distinct from the assisted dying process.

I am not opposed in principle to Daniel Johnson’s amendments 18 and 19, but I question how necessary the proposed commission would be, given the provisions that are already in the bill and the level of Scottish Parliamentary Corporate Body resource and MSP capacity that are likely to be involved. The bill requires data gathering, reporting and review. There will be opportunities for the Parliament to consider monitoring and scrutiny through existing structures, such as the relevant committee considering the annual reports or undertaking any other scrutiny of the act that it wishes to do. Thus, I do not believe that a commission is necessary. I also note the drafting issues highlighted by Scottish Government, not least in relation to the interaction with the Public Finance and Accountability (Scotland) Act 2000 and the Interpretation and Legislative Reform (Scotland) Act 2010.

Murdo Fraser’s amendment 199 is similarly well intentioned. Ahead of introducing the bill, I gave lengthy consideration to the issue of how best to provide for proportionate oversight. However, I am not convinced of the extent to which such an oversight body would provide an additional safeguard. I also note that its remit appears to overlap with that of the General Medical Council. As I did for Daniel Johnston’s amendments, I would argue that the balance is always to ensure that safeguards do not act as an unnecessary obstacle without providing any meaningful added protection. I am also mindful that various amendments have been lodged that propose different models of oversight.

In that context, I reiterate what the bill provides for and the processes that exist currently that would ensure that the act can be implemented safely and transparently. I have previously referred to the stage 1 evidence from the Crown Office and Procurator Fiscal Service’s Scottish fatalities investigation unit. The bill also provides for the collection of data, a publication of annual reports and a five-year review of the legislation—which amendment 199 also provides for.

Stephen Kerr’s amendment 129, which relates to his amendment 126 that was debated before, would provide for capturing information relating to the time between a person using the substance and dying, and to any complications. Amendments 183 and 184 in relation to that were passed last week, and I would expect the issues to be captured by those provisions.

Stephen Kerr’s amendments 201 and 204 to 206 would establish a rolling review period every two years. I consider that allowing for five years before a review of the legislation strikes an appropriate balance and allows the assisted dying process to have been operating for enough time to gather meaningful data, identify trends and draw conclusions or, if necessary, make recommendations.

I certainly will.