Seòmar agus comataidhean

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.

I take the point. However, I think back to the death of my father, for example, and the detail that was on the death certificate. There were two aspects to it. I will not go into the detail—not necessarily because I do not want to, but in the interests of time—but the information on the certificate and the fact that we had a death certificate and could therefore move forward with all the processes that it allows were both quite important. The information allowed us to understand the circumstances in which my father died. Had we not seen the full detail on the death certificate—there was a primary and a secondary cause of death—we would not have understood the impact of some of the changes in his life that led to his death. It is about the fact that a death certificate is more than a perfunctory piece of paper that allows you to move on with a cremation or burial, for example; it is an important part of the grieving process.

In the instances that we are discussing, families will want to understand whether it was the terminal illness or their loved one’s choice to end their life that, ultimately, ended their life. Not accurately recording that could leave many questions hanging over family members for a significant time—

My amendment 258 requires that the Scottish ministers,

“as soon as practicable after Royal Assent, carry out an assessment of the capacity of social care services provided by ... local authorities, and ... organisations providing social care ... to support the functions under this Act.”

I want to make members aware that I had hoped that the assessment of capacity could go beyond the capacity within social care services, local authorities and other providers of social care, and could go beyond looking at only the functions under the act. My intention was to highlight the level of difficulty that there can be in accessing social care, which can, of course, mean the difference between life becoming tolerable or being intolerable. However, given the scope of the bill, my amendment is drafted specifically to address supporting the functions under the act, and despite that limitation, I think that that would be a very useful assessment of capacity.

The amendment specifies that the assessment

“must, in particular, consider ... staffing resource associated with provision of social care services, including the training and support that will be required,”

and

“existing funding streams for social care services and organisations supporting disabled people.”

It further requires that ministers lay the report before the Parliament and that, within six months of the report being laid, the Parliament must

“consider a motion to approve the report.”

My amendments 280 and 284 provide that the sections cannot be brought into force until that report on the assessment of capacity within social care services has been published.

As I have said before, and it is important to say again, I think that it is crucial that we send a signal that we are a country that seeks to make it easy to choose to live. Part of that is about having access to good social care when we need it, and all of us around this room will have inboxes full of casework that shows that that is just not the case. If we pass a piece of legislation that seeks to offer someone the alternative of ending their own life, in the absence of capacity in an essential system such as social care, which can make the difference between finding life tolerable or intolerable, we could be sending a signal—in fact, it would not be a signal; it could be easier to choose to die than to choose to live. The assessment and report are a crucial part of bringing in any legislation to support people to die.

My amendment 287 would specify that the act may not come into force

“a day before the day on which legislation is brought forward by Scottish ministers to remove charges for non-residential social care being provided to, or which would otherwise be available to, terminally ill adults requesting assistance”

under the act.

As I said about my previous amendments, I want the provisions to be broader, so that we are looking at the capacity in the social care system in order to be certain, or as certain as we can be, that a lack of capacity in that system is not impacting on somebody’s decision whether to continue with a loss of function at any point. I wanted that aspect to be much broader than only in relation to the bill.

It is also important to understand that the difference between accessing social care and not accessing social care is not only about its availability; for some, it is also about the associated charges. Some people might pay in excess of £700 or £800 a week towards their social care, which can be quite prohibitive. Some people decide to deny themselves access to social care based on its cost. The fact that they cannot afford to access social care as a result of the charges might mean that they can no longer engage in some aspects of their life.

Ending non-residential social care charges has been an ambition of the current Government for some time but it has not yet delivered it—that is not intended to be a political point, although plenty of political points could be made. The fact remains that the charges are not yet abolished and they are still causing some significant concern for people accessing social care. A barrier such as the cost of access to social care should not be in the way, particularly if legislation on the statute books gives people the option to have an assisted death. That is why my amendment seeks to say that we could not bring in the legislation in an environment in which some people have lost out on crucial social care. I can testify to how important access to social care is—I am sure that members have seen the difference that it can make to people’s lives.

We cannot put a piece of legislation on to the statute books that could assist people to die while some people are making the choice to do without social care on the basis that they cannot afford it, which puts them in such a situation that they find their life intolerable. That is why I have lodged the amendment to say that we must first end non-residential social care charges.

Together, the measures speak to an important point. At the risk of labouring said point, it is important that, if we are legislating for people to die, we ensure that we are doing so in an environment in which the choice to live is viable. As it stands, I am not sure that that is the case, given the situation in social care and with social care charges that can prohibit some people from accessing it. The amendments seek to protect against that, which is why I have lodged them.

Amendment 252 seeks to create an offence of advertising assisted dying. It will make it illegal for any person to “publish, distribute or display” material that promotes, encourages or solicits assistance for a terminally ill adult to end their life.

The amendment’s definition of “advertisement” is broad: it covers printed, electronic and social media communications, as well as other forms of public or private communication. The proposed penalties include fines on summary conviction and imprisonment of up to two years, a fine or both on indictment. The sentences are identical to those that have been proposed in similar amendments at Westminster. The section that amendment 252 proposes will not apply to professional or educational communications in which no encouragement or solicitation has occurred.

There is a striking omission from the bill—nothing in it prevents another person from encouraging someone to seek an assisted death. In our discussion on a previous group of amendments, we had a conversation about the role of health professionals. It is important for us to understand that, if we are trying to support people to live—which I think is what we, as a Parliament, are aiming to do—we need to have conversations about that, as opposed to conversations about assisting people to die. As we have just amended the bill to include some conversations initiated by medical professionals, I think that it is important that we look to prevent the advertising of assisted dying on any scale.

This is not just a small oversight. People who come under the scope of the bill are, by definition, at a very difficult and vulnerable point in their lives, whether physically, emotionally or, indeed, psychologically. They often put immense trust in others, including medical professionals, family members and carers, believing that they have their best interests at heart. However, even a gentle suggestion, or a question asked at the wrong time, could have a powerful and dangerous impact on someone who might feel as though they are a burden or who is struggling to find hope.

If the bill intends to be about choice, as advocates say that it is, that choice must be free from pressure, persuasion or professional suggestion. Anything less risks crossing the line from autonomy to influence. Amendment 252 seeks to provide such a safeguard by making it clear that any request for assisted death must be entirely self-initiated by the individual and must not be the result of encouragement, suggestion or inducement. It will protect people from subtle but powerful pressures, spoken or unspoken, that could lead them to see death as an obligation rather than an option.

I ask committee members to think about whether they have seen any examples of advertisements for assistance for people to live, advertisements for the great good that can come from having personal assistance and a really good social care plan, or advertisements for accessible homes where disabled people are living full and enjoyable lives. Such advertisements are few and far between, if they exist at all. I have always argued that, in this Parliament, we should be doing what we can to legislate to make it easier for people to choose to live rather than to die.

Amendment 252 seeks to make it clear that we cannot have adverts that would encourage people to have their lives ended, particularly in a context where we rarely see advertisements for a good life, in which disabled people’s rights to practical assistance and support enable them to participate in society and lead an ordinary life.