Seòmar agus comataidhean

I speak to amendment 56, which I lodged on behalf of Children’s Hospices Across Scotland. I think that we would acknowledge that one of the central problems with the bill as drafted, as identified in the committee’s stage 1 report, is the definition of “terminal illness”. It is extremely complex to diagnose and assess, particularly in young adults. There is a genuine feeling that there is a need for further definition in the bill about young adults specifically and not just about adults in general.

The bill’s definition of a terminal illness does not recognise the significant clinical differences between a young person with a life-shortening condition that might meet the bill’s definition of terminal illness and an older adult with a terminal prognosis. The current definition would bring into scope young people who potentially have years of stable life left to live, which goes against the stated intention of the bill that it should be reserved for those at the end of life.

An example is a young person with complex Duchenne muscular dystrophy, for which medical advances can delay an ultimately inevitable death for years or even decades.

Other conditions such as—[Interruption.]—I am having a problem pronouncing words today; I did not lose my voice as Ross Greer did and I kept going, but sometimes I wonder whether I should have done so. I will try again.

For other conditions, such as spinal muscular atrophy, treatment options are increasingly becoming available that might alter prognosis and quality of life to such an extent that the position of the young person in relation to assisted dying would change dramatically.

Key terms such as “advanced and progressive” do not have accepted standard definitions or interpretations in the clinical context. There are multiple ways to define premature mortality, especially in the context of a young person with a life-shortening condition who, by definition, is likely to die young. My amendment 56 is essential if we want to safeguard young people and provide certainty and clarity to medical practitioners about how they must interpret the act in their clinical assessment of a young person. I believe that a guarantee is needed within the bill. Making provision for such guidance within the bill will help to ensure that young people are not at risk of being approved for assisted dying prematurely.

Thank you, convener, and my apologies for being slightly late. I missed Liam McArthur saying that he supports amendment 54, but somebody told me that he does. Unfortunately, he does not support amendment 55, and I fail to understand why, given that, should the bill pass, it is important that it fits into the landscape of palliative and end-of-life care.

All that amendment 55 seeks to do is to create a code of practice to ensure that assisted dying interacts appropriately with hospices and other providers of palliative and end-of-life care. All my amendments come from Hospice UK. Although it has taken a neutral position on the bill, it feels that sufficient safeguards are required for the smooth operation of the bill, should it pass. I therefore suggest that we should listen to the views of key stakeholders in that regard.

We all recognise that this is a significant piece of legislation. The Scottish Government has not yet fully engaged in the legislative process. I understand why—it is a member’s bill—but it is safe to say that this is probably the most significant member’s bill that we have ever considered in the Parliament, at this stage. I know that Patrick Harvie and Margo MacDonald introduced such bills previously, but this is the furthest that such a bill has ever got. It is really significant, and I hope that the Scottish Government engages soon.

It is important to be sure that the bill works effectively and, at the very least, does no harm. Therefore, scrutiny and monitoring will be essential to ensure that we get this right. I urge committee members to support amendments that advance reviews and assessment to assure people as to the suitability of the bill. I therefore press amendment 54.

Amendment 54 agreed to.

Amendment 55 moved—[Jackie Baillie]—and agreed to.

Amendments 71 and 71A moved—[Jackie Baillie].

The result of the division is: For 5, Against 4, Abstentions 1.

Amendment 275 agreed to.

Amendment 48 moved—[Liam McArthur].

I have just finished, but I am happy to give way.

It does not do that. It does makes it really clear that it would be up to the young person to make that request, and the doctor can then deal with it.

However, I think that such discussions would have unintended consequences. A young person with a life-limiting illness usually has the same medical team over time, and they become almost like family members. Something said by one of the team can be perceived as a recommendation rather than as entirely neutral. My amendment presents a belt-and-braces approach to ensure that that does not happen and that no such unintended consequences result from the legislation.

I rest my case on the fact that CHAS thinks that this provision is critical.

I certainly welcome that intervention, and I hope that that ends up being the case. However, Hospice UK has advised in its briefing that, in other jurisdictions where this has happened, palliative care has suffered. We need to make sure that that does not happen here. I am only sharing with members the evidence that Hospice UK has provided me.

I have no problem in agreeing 100 per cent with Bob Doris on that point. That does not happen often, but on this occasion I am delighted that we are in lockstep. I could not agree more with his comments. My amendments in this group are about being pragmatic and making sure that the palliative care and hospice sector is protected.

Amendment 57 would ensure that the five-year review considers the impact of the bill on palliative and end-of-life care services.

Amendment 64, which is consequential to amendment 54, requires an initial assessment of the legislation’s impact on palliative and end-of-life care, a report on which should be published prior to the substantive provisions of the act coming into force. The member in charge of the bill has indicated that he would consider that that would delay the act’s implementation. Hospice UK is clear that that is not its intention, and it thinks that the assessment can be made very quickly.

Amendment 61 requires that report to be published.

I move amendment 54.

Will Mr McArthur give way?

I have lodged amendments 76 to 79 on behalf of the Royal College of Nursing Scotland. As you know, RCN Scotland maintains a neutral stance on assisted dying, but it has serious concerns about section 15, specifically the expectation that registered nurses acting as authorised health professionals will carry out complex assessments of capacity and coercion, and the possibility of nurses providing assistance while working alone.

Amendment 77 proposes that final assessments of capacity and coercion be carried out by a doctor. Such clinical judgments are complex, especially when time has passed—there might have been earlier assessments, and factors such as pain or medication might affect cognition. It might have been months since the co-ordinating and independent doctors undertook the assessments to determine eligibility, and capacity can fluctuate in a person who is terminally ill. Similarly, identifying coercion is inherently difficult, particularly without a structured framework.

Although some nurses in advanced practice roles have the relevant expertise, the bill is structured in such a way that those specialists are unlikely to be asked to act as authorised health professionals. Instead, nurses in more general settings, such as community care, general practices or hospital wards, might be expected to take on the role infrequently. RCN Scotland believes that assessing capacity in this context requires a depth of knowledge and experience that goes beyond the scope of practice of most registered nurses, and the amendment seeks to ensure that the final assessments are undertaken by either the co-ordinating doctor or another authorised doctor. The RCN believes that that is a safer and more appropriate approach.

Amendments 76, 78 and 79 address RCN Scotland’s serious concerns about lone working. The bill, as it currently stands, allows nurses to provide the approved substance alone, which RCN Scotland considers unsafe. The provision of assistance will take place in a highly sensitive and emotionally charged environment, where complex family dynamics might arise. Nurses might then face distressed families; individuals who are unable to self-administer and therefore cannot receive assistance; or unexpected reactions to the substance. Current practice for controlled drugs typically requires that two registered nurses prepare and administer them, and that safeguard should apply here, too.

These amendments would require a nurse acting as authorised health professional to be accompanied by another health professional. In practical terms, that would mean that a doctor would carry out the final assessments on capacity and coercion, and either they or a nurse accompanied by that doctor would then provide the substance. Where a nurse provides the substance, either the accompanying doctor remains present, or the doctor leaves and another health professional arrives to accompany the nurse while the person decides whether to use the substance, and if they have done so, has subsequently died.

Although the bill allows a nurse to be accompanied, it does not require it; instead, it leaves it up to individual nurses to advocate for themselves when they are asked to attend alone, and we do not regard that as acceptable. RCN Scotland believes that these amendments would introduce essential safeguards and must be incorporated into the bill.

I am moving the amendments in this group on behalf of Hospice UK, which, as members will know, represents the palliative care sector in Scotland.

My amendments 54, 55, 61 and 64 are a package that is designed to assess and mitigate any impact on the hospice and palliative care sector of the introduction of assisted dying in Scotland. Amendment 54 and consequential amendment 64 require an assessment of the impact on palliative end-of-life care services of assisted dying being legalised, and amendment 61 requires that a report be published prior to assisted dying being available.

My amendment 55 sets out the creation of a code of practice on how assisted dying would interact with hospices and other providers of palliative and end-of-life care. Additionally, my amendment 57 requires the five-year review in the bill to also consider the impact of the act on hospices and other providers of palliative and end-of-life care services.

If I may, I will set out briefly the reasons for the amendments. We all know that hospices have been under pressure on funding for years—they are stretched to breaking point. Demand is rising because we are all getting older and suffering from more complex health problems and care needs. Hospices need to grow to meet that rising demand but the reverse is happening. Their concern is that the bill will represent a significant change to people’s choices at the end of their lives, and they want to be sure that all staff and organisations, such as hospices, that care for people who have a terminal diagnosis at the end of life, will be supported through that change.

Amendments 54 and 55 therefore set out an approach to assessing and managing any impact on hospices and other providers. The approach aligns with the committee’s stage 1 recommendation that there needs to be careful consideration of how the bill, if it becomes law, will interact with all other key aspects of end-of-life care provision, including palliative care. The key aim of the amendments is to ensure that assisted dying coming into operation in Scotland does not have unintended consequences on palliative care services.

We know that palliative care services in jurisdictions where assisted dying has been legalised have experienced increased demands on time, with resources being diverted from palliative care to support people and families around assisted dying. That is a pragmatic assessment of where there might be implications for hospices.