Seòmar agus comataidhean

Good morning, convener. I thank all members who have lodged amendments to the bill at stage 2. The breadth of the amendments will allow most of the substantive issues that the committee wrestled with at stage 1 to be debated at stage 2, which is the purpose of the process.

I thank Jeremy Balfour and Daniel Johnson for setting out the rationale for their amendments and I agree with much of what they have said. In other jurisdictions, we see that people are accessing the choice that the bill would enable at the end of their life, but I understand why we are having the debate.

Before I touch on the amendments that have been spoken to, I will first address my amendments. My amendment 24 clarifies that,

“For the avoidance of any doubt, a person is not”

to be considered as meeting the definition of terminal illness as set out in section 2

“only because they have a disability or a mental disorder (or both).”

That does not, however, prevent a person from meeting the requirements as set out in section 2 from being regarded as a terminally ill person.

Amendment 26 is consequential and tidies up drafting.

I noted the concerns that were raised at stage 1 about the potential risk of a person with a disability or a mental disorder being assessed as meeting the definition of terminal illness as set out in section 2. I am clear that the bill, supported by its accompanying documents, does not permit a person to be assessed as being terminally ill for the purposes of the bill only because they have a disability, a mental disorder or both.

However, in order to provide further reassurance of policy intent and on the meaning of section 2, and to further inform any future guidance on and the practical operation of the act, I have lodged amendment 24. It is not a change of policy but it will remove any doubt. I remain of the view that, if it is their wish, a person must not be prevented from requesting assistance to end their own life because of a disability or a mental disorder, if they meet the requirements as set out in the bill and are assessed as being eligible.

Jackie Baillie’s amendment 73 relates to the amendments that I have lodged in this grouping. Amendment 73 and consequential amendment 84 duplicate the part of my amendment 24 that relates to mental disorder but do not include the part about disability. I am therefore supportive of the principle of Jackie Baillie’s amendments, but I ask her not to move them, and I ask that the committee supports amendment 24, given its application to mental disorder and disability.

I turn to Jeremy Balfour’s amendment 143, which, as the convener said, pre-empts amendments 144 and 4. The first two parts of the amendment, which relate to the diagnosis of an

“irreversible and actively progressive disease, illness or condition”

for which

“no treatment is available that could reasonably be expected to prevent death or lead to recovery”,

are already provided for in section 2. On the proposal that terminal illness should be defined as a person being considered to have three months or less to live, as the committee heard during stage 1, there are risks in including a timeframe for a prognosis of death.

Will Mr McMillan take an intervention?

I am afraid that I am going to proceed, Mr Balfour.

The Scottish Government has identified potential legislative competence issues. I am aware that the Scottish Government is working with the United Kingdom Government to ensure the full operation of the bill, should it be passed. Although the Cabinet Secretary for Health and Social Care is not here to update us on those discussions, it is important to acknowledge the issues that those amendments raise.

Amendment 256 seeks to amend the Public Bodies (Joint Working) (Prescribed Health Board Functions) (Scotland) Regulations 2014 by adding the assisted dying for terminally ill adults legislation to its schedules. I am supportive of that amendment.

On amendment 257, I have always taken the view—I think that it was reiterated by Sandesh Gulhane earlier—that it is for the healthcare sector to determine how to manage the assisted dying process within the parameters of the bill. Fulton MacGregor acknowledged that in his remarks. Therefore, my feeling is that it should be left to the health and care sector to determine whether it would be appropriate for each health board to set up a specialist assisted dying process.

Amendment 257 mandates that every health board set up a service, while amendment 256 mandates joint working with the local authority. I wonder whether the amendments are proportionate and not overly restrictive. I understand absolutely what Fulton MacGregor is driving at and the reasons why the RCN and others wanted the amendments to be lodged and want them to be agreed to. There are certainly examples in other jurisdictions in which provision is mandated in similar ways, which, ostensibly, is to ensure access. I am happy to work with Mr MacGregor ahead of stage 3 to see whether something more proportionate might be achievable.

Amendment 277 is a consequential amendment to ensure that—

I think that I have explained that the conversations that would be had as part of the assessment of the rationale for why a request has been made are not happening at the moment. Therefore, the bill would not only provide protections but extend them far more widely to those who are currently left vulnerable.

Moving on to amendments 85 to 87, 104, 105, 107, 112, 118, 120, 124, 139 and 140, lodged by Bob Doris, I consider that personal choice and autonomy is at the heart of the bill, which provides appropriate and proportional safeguards, while allowing those who wish to have assistance to be able to access it in a reasonable time and within a reasonable framework. It is fundamental that a terminally ill adult makes the choice to request assistance themselves without coercion or pressure by another person. The bill clearly provides for that and makes it an offence to coerce or pressure a person into requesting assistance and, as I have said, I have also lodged an amendment that adds the offence of coercing or pressuring a person into using an approved substance.

However, I am very wary about widening the current definition of coercion or pressure from some form of illegitimate influence being brought to bear by another person, to something that is done by the person themselves, societal expectations, or by the health and social care system, as opposed to individuals within the system or in the state. I am concerned that defining coercion and pressure in such a way would risk introducing new definitions of legal terms, which would create confusion and make the detection of coercion or pressure and the prosecution of offences in the bill more difficult.

I understand what the member is getting at with those amendments and I understand that there are various factors that may express a person’s vulnerable status and situation, which would potentially make them prone to influence and could affect their decision making. However, I believe that retaining the need for coercion or pressure to be an act that is done by another person, supported by the offences in the bill and the ability for other health, social care and social work professionals to input into the assessment process, is the best way to proceed.

I thank Jeremy Balfour for that, and for clarification that amendment 143 is more of a probing amendment. As I say, it is important that we have this discussion, because it is a live debate. As I will touch on shortly, similar prognosis periods are applied in other jurisdictions.

Although a prognosis period of six months was initially proposed for the Social Security (Scotland) Act 2018, Parliament’s view was that, because of the practical difficulties with that, it would be more appropriate to set no timeframe.

Many who gave evidence to the committee at stage 1 took that view, noting how difficult it can be for a professional to estimate with any confidence how long a terminally ill patient has to live. That will depend on the condition. The committee’s stage 1 report concluded:

“on balance, the Committee recognises the rationale ... for not including a prognostic timescale in the definition of terminal illness set out in the Bill and for arguing that it is ultimately better to leave determination of whether or not an individual meets that specific eligibility criterion to clinical judgement.”

I am never ambivalent, Patrick Harvie—you will know that.

I am reluctant to support the amendments as they are framed, but Jackie Baillie raised some reasonable points in relation to the regulation of services, particularly those outwith the NHS. Fulton MacGregor spoke about embedding the service within the NHS and for that to have protocols and all the rest of it. That is the most appropriate route to proceed along. However, as I said, Jackie Baillie’s points about services that are outwith the NHS are reasonably and fairly made.

I turn to Bob Doris’s amendment 128, and note that amendment 138 is a consequential amendment that seeks to ensure that related regulations are subject to the affirmative procedure—or possibly, given his earlier comments, bumped up to super-affirmative procedure. I am keen to ensure the safety and welfare of anyone who is seeking assistance under the bill’s provisions, and I believe that the bill includes safeguards to ensure that that happens.

I note that health professionals who choose to participate in assisted dying are already regulated by the General Medical Council, which provides robust oversight. I acknowledge that there are already mechanisms for raising concerns about health and social work professionals, and I would be concerned about setting up dual-running processes, which would only add confusion.

I am not persuaded of the need for or appropriateness of ministers being required to create an exhaustive list of places where assisted dying can take place, for many of the reasons that Patrick Harvie alluded to in his intervention.

With regard to subsection (3) in amendment 128, I remind the committee that there are already established mechanisms for raising those concerns.

In relation to the linked amendments 141 and 142, I have serious reservations about the commencement of the substantive provisions of the bill being subject to the regulations that are provided for in amendment 128. I believe that, as with other amendments that seek to prevent the act from being properly implemented, that risks an unacceptable delay for those who wish to have and need assistance being able to request it.

I will certainly support amendment 256. As I said, there is an issue about proportionality with amendment 257. There are examples of similar provisions in other jurisdictions for reasons to do with guaranteeing access. I am more persuaded of the rationale for allowing those who are in the sector to develop the model. My evidence to the committee at stage 1 acknowledged that the service will look and feel different in different parts of the country because of the circumstances that each area will need to deal with. That is already happening daily in health and care.

I understand the motivation behind amendment 257 and I understand why the RCN and others seek that provision. As it stands, the amendment may be disproportionate, but I would certainly be happy to work with Fulton MacGregor ahead of stage 3 to see whether something can be worked up that might address those concerns.

Again, I reject the reference to “assisted suicide”. We can have a debate at another point about the difference between the mental state of someone who is seeking to take their own life and someone with a terminal illness who is seeking to take control over that process.

What I have said, and what is set out in the bill as it stands, is that this relates to someone with an “advanced and progressive” condition. Although I understand the argument for setting a prognostic timeframe—and I welcome the fact that we are having this debate—the committee concluded from the evidence that it took that doing so would be problematic. On that basis, I do not support the amendments on that, and I urge Bob Doris not to press them.

On amendments 145 and 207 by Brian Whittle and amendments 25, 30 and 31 by Rhoda Grant, I fully support the principle of a terminally ill adult having available information and options explained to them and having in place appropriate care plans—including for palliative care, where appropriate—if they wish. That is why section 7(1) would require the assessing doctors to explain and discuss the person’s diagnosis and prognosis, available treatment, palliative and other care options, and the assisted dying process and the substance that would be used. It is also why I lodged amendment 29, which aims to ensure that palliative care discussions include available hospice care, symptom management and psychological support.

As Sandesh Gulhane suggested in his intervention, greater use of advanced care plans would be welcome and would help to increase the likelihood of people having their wishes respected, but it is important that such plans remain voluntary. I am therefore not supportive of adding to the eligibility criteria in the ways that are proposed in the amendments, which would include a person having an anticipatory care plan or a palliative care plan in place. Doing so would risk adding a barrier to a terminally ill adult who is otherwise deemed eligible being able to access assistance because, for example, they did not want such a plan or did not wish to have palliative care, which can be a matter of personal choice.

I get the point that you are making. Ideally, one would want people to have as much advance planning, including in terms of palliative care, as possible. However, making such plans part of the eligibility criteria is highly problematic, for some of the reasons that I have touched on. I will come on to address those in more detail. Making such plans part of the eligibility criteria could result in a terminally ill adult, who would otherwise be eligible but has a short time to live, dying before such a plan could be put in place.

The Scottish Government has also highlighted the chief medical officer’s confirmation of a

“change in terminology from ‘anticipatory care planning’ to ‘future care planning’”,

while noting—and I agree—the following:

“The process of developing a future care plan should be holistic and person-led, with a focus on shared decision-making. As such, setting out that a person must have a plan in place which must include a plan for palliative care in order for them to be eligible for an assisted death goes strongly against this person-led ethos, given that some people may not want palliative care for a number of reasons.”

Regarding Pam Duncan-Glancy’s amendments 219, 221, 222 and 228, I fully support people with terminal illnesses having full access to social care. However, I am concerned about adding a requirement for a person to have such care in place in order to meet the eligibility criteria for assistance. I do not agree that a person should be ineligible for an assisted death if they have not accessed social care or if they have been on a waiting list to access social care for six continuous months. Adding such a requirement risks adding a barrier to a terminally ill adult who is otherwise deemed eligible to access assistance.

Regarding Ms Duncan-Glancy’s amendment 227—

I do not happen to agree with that. As I go through and respond to the amendments, the rationale for that might become clearer.

Amendments 143 and 144 offer alternative options. The former suggests a prognosis period of three months. As well as my general concerns about setting a prognosis period, I add that there are no examples from around the world of a three-month prognosis timeframe. Not only would it risk eligible adults being unable to access the choice in time, it would risk—as I think Daniel Johnson rightly pointed out—placing pressure on them to make a hurried decision. I know that Mr Balfour would not wish for that to happen.

A six-month period, as suggested by amendment 144, is certainly more realistic, albeit that I offer the same general reservations about setting a timescale for prognosis. Amendment 144 also proposes adding, for the avoidance of doubt, that a person should not be considered terminally ill if their

“condition can be controlled or substantially slowed down by medical intervention”.

I remind colleagues—this perhaps addresses some of what Pam Duncan-Glancy was saying—that the definition that is set out in the bill states that

“a person is terminally ill if they have an advanced and progressive disease, illness or condition from which they are unable to recover and that can reasonably be expected to cause their premature death.”

I remain of the view that the definition of terminal illness as set out in the bill is appropriate and captures the appropriate cohort of people.