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I will press amendment 229. We have had much debate on the group, including from last week, so I will be brief in my remarks, but I will remind us of some of the discussion that we had last week, which is important.

Checks and balances in legislation, particularly in matters of life and death, are crucial. Members have asked whether the referrals in my amendments, which come at the end point, are too late, perhaps suggesting that there is an issue with the drafting. However, the fact is that referrals do not readily happen. Referrals to social work or to disabled people’s organisations, to help disabled people or terminally ill people understand what it could be like to have to live a life in which they have a loss of function of some description, do not happen all that readily.

That is why it is important that, in this legislation if in no other—it should be in other legislation, too, but we have one piece of legislation before us today—referrals must be in place. I seek to add them to the bill because, as a last resort, surely, in considering life and death, the Parliament must contend that such provisions are crucial, even if we cannot provide them before that.

Many disabled people talk about how disabled people’s organisations changed their lives and helped them to see that life was indeed worth living. I note some of the comments that were made last week, particularly by my colleague Liam McArthur, saying that that is subjective. That is true, but so is the level of tolerance that people have for loss, and so is the desire to live or die. People who are seeking to end their lives must have access to that emancipatory support. Without it, life may appear, for some, to be intolerable.

Right now, the organisations that provide such support are on their knees and there have been questions about capacity, but there is no requirement to meet requirements on social care or housing—nor, indeed, to prevent poverty. Liam McArthur was right, last week, to raise questions about local authorities’ ability to meet the requirements of article 19 of the UNCRPD. Indeed, I am sure that they readily fall short, due to the lack of resources that they get. My amendments are an 11th-hour attempt to force action on the human rights of disabled people, which, surely, the Parliament must ensure that we put in place, to make it easier to live if—should the bill progress to stage 3 and pass—we legislate to help people to die.

Furthermore, I suggest that, in the absence of solid mitigation against such intolerable circumstances, fears that are proffered—for example, that people will not declare money concerns or the feeling of being a burden, so that they may be supported to die—would be better addressed by ensuring that the amendments are made, so that it is easier to live, rather than rejecting them, as has been the case so far.

These are reasoned amendments. They would protect the human rights of disabled people and people with terminal illnesses, and I encourage the committee to support them.

I press amendment 229.

I am listening carefully to the point that the member is making and I understand his concerns about restricting that sort of doctor-patient conversation.

His amendment proposes a framework. How does he imagine managing the issue that the quality of life of a disabled person, or of someone who has lost function—which is very likely in the case of people who are considering assisted dying—is often rated by other people, and, indeed, by health professionals, as being much lower than it would be rated by the individual themselves? There is a risk that someone could imagine that life must be so difficult that they would suggest that the person should consider assisted dying. Has the member thought about how to mitigate that in the context of his amendment?

I just want to finish this point first.

It could leave questions, such as how much longer the person might have had and whether or not they died of that condition. I think that that could be really difficult, so my amendments are important—yes, for data collection, but that is secondary to the convener’s point about the grieving process and the importance of families fully understanding what their loved one has gone through.

Good evening. Amendments 246 and 247 would ensure a transparent and accurate recording of deaths resulting from assisted dying. Amendment 246 would require that the individual’s terminal illness be listed as “an underlying condition”, while amendment 247 would require that

“the act of assisted dying”,

including ingestion or administration of the approved substance, is

“recorded as a direct cause of death.”

The amendments promote what I think is honest documentation that supports future public health monitoring and avoids misleading records. The bill as it stands instructs that, for someone who undergoes assisted dying, the cause of death be recorded simply as their terminal illness. That is problematic, not least because without a proximity-to-death test, it would be difficult to say whether the terminal illness was the direct cause of death at the time.

I will be honest and say that, at that level of detail, I have not. However, I understand that that sort of information and detail is quite important with regard to the accuracy of recording the number of deaths as a result of cancer, for example. That could still be counted as the primary or secondary cause of death, and it would not be beyond National Records of Scotland or Public Health Scotland to work in a system that was set up specifically to look at whether the act of assisted dying or the underlying condition was the primary cause of death. There are tried and tested systems that have been used for a long time that would be able to manage that question.

The point that I am making is that the Parliament has a responsibility to set the parameters for the legislation and to be really clear about not only what we want to record, but how we want it to be recorded. It is important for data collection but also for closure and understanding for families that we record the cause of death accurately. Forgive me for putting it like this, but if someone who has a terminal illness, such as cancer, dies in a car accident, the cause of death is not cancer; the cause of death is the thing that happened that caused their death. I think that we have to be really careful to record these things accurately.

I appreciate that these are different examples, but I am trying to illustrate why it is important that we accurately record what caused someone’s death. Saying that someone also had a terminal condition does not take away from that—I am sure that that could and should still be recorded—but it should be recorded that, ultimately, that is not what caused them to die.

I am happy to take the member’s intervention, and I am sorry for the delay in doing so.

I thank members for that discussion. I have listened carefully, particularly to some of the technical aspects, not least from Patrick Harvie on social media. I have also listened to Liam McArthur’s points on the specific provisions in the amendment.

I want to test with Liam McArthur the point on the breadth of the definition and what my amendment is seeking to not advertise, if that is the right way of putting it. We have an opportunity to look at whether the definition should be broader. It is not necessarily unhelpful that it is broad, given that existing legislation can change and that there could well be a difference between UK and Scottish legislation.

I would be keen to know whether that aspect would be a deal breaker at stage 3, if I were to bring back a revised amendment, or whether there are other aspects of the amendment that Liam McArthur thinks could be tightened up through drafting that would meet with some support.

I have not been given instructions.

I have been instructed to move the amendment.

Amendment 159 moved—[Pam Duncan-Glancy].

Good morning to the committee and others, and thank you, convener, for allowing me to comment on this issue.

The most recent concluding observation by the UN Committee on the Rights of Persons with Disabilities in relation to Canada, for example, said that track 2 MAID—or medical assistance in dying—is for people with disabilities whose deaths are not reasonably foreseeable. That is a similar situation, given that the bill currently going through the Scottish Parliament does not have a proximity-to-death definition. The CRPD committee says that that approach was based on

“negative, ableist perceptions of the quality and value of the life of persons with disabilities, including ... that ‘suffering’ is intrinsic to disability”

rather than the fact

“that inequality and discrimination cause and compound ‘suffering’ for persons with disabilities”.

Disabled people’s organisations in Canada said:

“The UN is clear that we must do better in upholding the rights and dignity of persons with disabilities”,

and the UN committee itself recommended repealing track 2, implementing “a co-ordinated deinstitutionalization strategy” and withdrawing the interpretative declaration under, and reservation to, article 12 of the convention.

A number of different concluding observations were made in relation to this specific aspect of the bill going through the Scottish Parliament. The only way that the UN committee, which is a committee of experts of disabled people, can give any advice to the Scottish Parliament is if a body such as either the committee or the Government makes that request. That is why it is important that the committee seriously considers the request that has been put to it today.