Chamber and committees

I understand the member’s view, but surely it is not an unacceptable delay but a necessary delay to have in place those regulations before the act commences.

Will the member take an intervention on that?

I am listening carefully to the points that are being made. The point in amendment 24 about a person not being terminally ill only because they are disabled relates to Daniel Johnson’s point about timescales. I would argue that, without a timescale in the bill, it will be difficult to separate the difference between being terminal and being a disabled person under the amendment that the member has lodged. Does the member accept that, in most circumstances, anyone who is terminally ill is also considered to be disabled, and the two things are inextricably linked?

Will the member take an intervention on that point?

Amendments 220, 223, 237 and 238 would ensure that requests for assistance to end life under the Assisted Dying for Terminally Ill Adults (Scotland) Bill are entirely self-initiated by the terminally ill adult and are made without any encouragement, suggestion or inducement from medical professionals, practitioners or other professionals involved in their care.

Amendment 220 is in reference to eligibility, amendment 223 is in reference to the person’s first declaration, amendment 237 is in reference to the statement by the co-ordinating registered medical practitioner and amendment 238 is in reference to the statement by the independent registered medical practitioner.

The notion of coercion has been discussed and debated at length in other jurisdictions, particularly in relation to gender-based violence. By definition, it is difficult to detect coercion but, nonetheless, it is incredibly important that, when we are considering legislation that allows someone to take their own life, we ensure as best we can that it is absolutely watertight that the people whose job it is to support a person to live do not take any part in suggesting that that person may end their life.

I want to speak for a moment about the wider coercion that I highlighted in the stage 1 debate—and I note that the amendments in Stuart McMillan’s name seek to look at some of these same issues of pressure and societal coercion. We live in a society where choice for disabled people—and by definition, therefore, people who are eligible under the bill for assistance to take their own lives—is not equal. Disabled people do not have the same choices as other people. They cannot get out of bed in the morning whenever they decide to do so; often, somebody else makes that decision, because it is all to do with the timings that suit the professionals around them. I am not saying that to critique the incredible social care professionals who support us, day in, day out; I am just recognising that there is a substantial element of control from other people in the lives of disabled people—and, indeed, the lives of terminally ill people. For reasons that I have rehearsed previously, the two aspects are difficult to unlink.

It is also the case that we live in a society in which disabled people’s lives, and the lives of people who have lost certain functions, are not valued in the same way as those of people who have those functions. She will not mind me using this example, but the incredible Paralympian Tanni Grey-Thompson, in a debate in the House of Lords, said that she was incontinent, and then talked about people saying, “I would rather die than be incontinent.” She had to face that in the House of Lords, and she said, “Well, I lead a very open and enjoyable life.”

We have already heard this from other members, but the fact is that, although everybody’s understanding of quality of life can be quite different, there is very much an understanding that disabled people’s lives are often valued less than non-disabled people’s lives. Often the loss of function, whatever it might be, can become something that people inherently fear. I fear it; I do not have a lot of function, but the very little function that I do have I would be scared to lose.

That loss can really be internalised. When people around us start to think that not being able to get out of bed on your own in the morning, not being able to shower yourself, not being able to take yourself to the toilet or not being able to feed yourself is a life not worth living, people who, by definition, have a terminal illness, or any other illness, can find themselves internalising that and thinking, “What is my life worth if I can’t do that? Other people do not think that that’s a life worth living.”

That sort of societal and everyday ableism exists and is a real danger in the context in which we are bringing in this piece of legislation. Disabled people are less likely to work. We are more likely to live in homes that are inaccessible; indeed, about 10,000 of us in Scotland are stuck in our own homes, because we cannot get into and out of them. Many disabled people—one in four—cannot access the palliative care that they need. High numbers of disabled people cannot access social care, because of the costs associated with it; high numbers of them do not access it because of the recruitment crisis; and many do not access it because the eligibility criteria determine that they are not able to do so. We are operating a system in Scotland in which we are literally providing life-and-limb care and support to a large majority of disabled people. In that context, the notion of choice and control is very difficult for a disabled person.

Therefore, my amendments seek to take out some elements of what coercion could be. They will not be able to address all of the issue, and I ask members to think carefully about that, particularly when listening to Stuart McMillan’s argument, which I am sure will be powerful, on the points around pressure and societal coercion.

It is those areas that really worry me about the bill. Unless we fundamentally change social care, unless we fundamentally change healthcare, unless we fundamentally change our housing system and unless we can get to a system that does not oppress or discriminate against large swathes of society, the context in which we are bringing in the bill will be very dangerous. The amendments that I have lodged in this group seek to try to protect at least some small part of this; I would have lodged other amendments dealing with the broader aspects of what I am talking about, but I was told that they were not within the scope of the bill. I ask members to reflect on that comment.

For the time being, I think that amendments 220, 223, 237 and 238 will provide some, if not all, of the safeguards that are needed in the legislation, and I ask, and encourage, committee members to support them.

I move amendment 220.

Can the member set out what aspects of his bill he thinks would safeguard against the coercion that could be experienced by disabled people?

It will come as no surprise to anyone, nor will it make any front page, that I do not support the legislation. People know that. However, I want to use this opportunity to raise some of the concerns that have been raised by disabled people and others, and to seek to strengthen the bill so that, if the Parliament decides to support it, it contains safeguards. That is what I am seeking to do.

Amendments 219, 221 and 222 make provision about eligibility for assistance but with an expanded definition of “appropriate social care”. Amendment 219 specifies that a person is eligible for assistance under the legislation only if they

“have accessed appropriate social care relevant to their terminal illness”.

In drafting the amendments, I had wanted the provision not to be quite so narrow as “relevant to their terminal illness”, because some people might need social care that falls outwith that, but I was told that the bill was too narrowly drawn to be able to do that. Therefore, I do not think that this is the safest bill as it stands, and I do not think that the amendment will make it safe for disabled people, for example, who access social care on a regular basis—or try to but are unable to get it. However, the amendment is important within the confines and the scope of the legislation.

Amendment 221 specifies that:

“a person is ineligible to be lawfully provided with assistance to end their own life if they have been—

(a) unable to access appropriate social care relevant to their terminal illness, and

(b) on a waiting list for such social care for a continuous period exceeding 6 weeks prior to making a request for assistance in accordance with the provisions of this Act.”

The amendment is important because all the members around this table know the experience of our constituents and how difficult it is for them to access any form of social care and, indeed, because of the points that have just been made about the social care that is required in a palliative care approach. It is very important that we do not create a situation in Scotland where such intolerable circumstances have arisen in someone’s life for them to assess that their quality of life is such that they cannot continue because they have not been able to access a crucial aspect of independent living, which is social care. The amendment is therefore essential.

Amendment 222 sets out a definition of “appropriate social care”, which includes but is not limited to

“care provided in accordance with each risk category of the national eligibility criteria”.

Again, members around the table will be well aware that a number of our constituents are struggling to access any social care that is not just literally life-and-limb care. Most local authorities are operating an eligibility system that says that individuals can access social care only if there is a “substantial risk” to life as a result of their condition. We have to bear in mind that the bar between whether life is tolerable or intolerable cannot just be that an individual is at substantial risk of dying if they do not get social care. That is why we need to consider the broadest possible definition, and it is why I have lodged amendment 224.

I stress to members that, even with my amendments, because of the narrow scope of the bill on assisted suicide we are only talking about people who are eligible in this context. We are not able to discuss or amend the bill to address social care in general, which I think is needed in order to prevent the everyday or internalised ableism that comes with being unable to access social care on a daily basis, and which can build into a feeling that life is intolerable. That also relates to the third grouping of amendments, on coercion. It is the sort of thing that could encourage people to end their lives. The amendments are narrowly drawn, but they are important.

Amendments 227 and 228 make provision about the assessment that the medical practitioner must undertake to ensure that the person has been offered and provided with appropriate advice and support. When many people are diagnosed with an illness, be that illness terminal or otherwise, there is a sense of loss. I was diagnosed with my illness when I was 18 months old, too young to directly experience any sense of loss, but I know that my parents did, and I know that the people who were around my parents felt that sense of loss. We need to ensure that we are creating a society around people that provides them with the level of support required and signposts them to the services that may exist to make their life tolerable, even at the end.

Particularly given the conversation that we have had on the previous grouping, on timescales, my argument remains that, if we do not sort out some of the structures—the systemic inequality that can come from the fact that social care does not exist for many disabled people to allow them to live their life equal to others—we are creating a circumstance where choice is not equal and we are not taking control of our own lives. The state is taking control of our lives and, I can say as a disabled person, it has been doing so for decades, because we rely so much on those systems. My amendments seek to operate within the constraints of the scope of the bill, and I am doing the best that I can, but they will not address some of the issues on coercion.

I also wish to talk briefly about the amendments where we have another opportunity—and I encourage members to take it—to consider including a time limit of six months. I turn to the arguments that have been made previously by many members, including Jeremy Balfour, Daniel Johnson and, more recently, Bob Doris, on the question of premature illness. I say what I am about to say not because I am looking for the tiniest violin in the world, or because I am trying to pull at members’ heartstrings, but because I am trying to set out the real dangers. I therefore encourage committee members to vote for the amendments that include a timescale.

On the definition in the proposed legislation, the policy memorandum says:

“the member decided to focus on whether a registered medical practitioner considers a person to have an advanced and progressive illness”.

I was diagnosed with juvenile idiopathic arthritis when I was 18 months old. I am now 44 years old, and there is not a medical practitioner in this country who would not consider my condition to be “advanced and progressive”. It is not something that I am going to recover from, and that has been proven time and again. I therefore meet those criteria. Yes, as a result of some aspects of my medical condition, it could cause my premature death.

As the bill stands, it has no protections. I do not think that it is intended to cover me—and I am not saying this to make it sound like I think that it is—but the fact is that it does. Without having the six-month time limit, we are opening up the bill to cover any advanced and progressive condition, and I have already made the point about most of the people concerned being disabled people.

I am asking the committee to take the opportunity now to put in the safeguard with some of the amendments. People know that I will still have some concerns, but the six-month time limit is incredibly important. Without it, how do we draw the line between allowing someone like me to choose this option—to take my own life because things have got so intolerable, because my social care has fallen apart, my house is not accessible or I cannot get public transport, or because of all the things that make life very difficult for disabled people—and not? I encourage members to think very carefully, please, about how they vote on the six-month time limit amendments in the group.

Forgive me—I had not realised that Ms Harper was just concluding. Can she say something about the types of costs and say in which part of amendment 13 she can see any scope for a reduction in costs?

I genuinely understand Fulton MacGregor’s intention, particularly in relation to amendment 257, given the points that I made on the record earlier about the Royal College of GPs. However, does he worry that having such a duty around assisted dying under the Public Bodies (Joint Working) (Scotland) Act 2014 would mean that there would be a lot of scrambling for funding with the other services that are also subject to that act? It could mean that some money would be moved from social care services to services that assist people to die.

Will the member take an intervention?