Chamber and committees

That is helpful, because planetary boundaries, the link to environmental limits and the need to include them in the definitions also came up in last week’s evidence session.

Sustainable development is raised in relation to many different aspects of legislation and outcomes that we are seeking to achieve, but no real definition is agreed. How can we ensure that we collectively understand what sustainable development means? Would the bill be a vehicle to firm up a definition?

I thank Paul Sweeney for securing the debate, which is on a topic that is hugely important to us all. As Richard Leonard pointed out, many of us in the chamber today spoke on the topic last year, and I think that many of us who return after next year’s election will talk about it again.

In my constituency of Carrick, Cumnock and Doon Valley, I see every day the quiet strength of communities that look after one another, especially when times are hard. However, I also see something that should trouble each and every one of us: people who are terminally ill and people at the very end of their lives spending their last precious months and days in poverty.

The preliminary findings from the invaluable research from Marie Curie and Loughborough University paint a devastating picture. More than 6,500 people in Scotland die in poverty each year, and more than 7,700 die in fuel poverty. Those are not just numbers on a page in a report—they are our neighbours, our parents, our friends or perhaps even our children. We know them, and we love them.

In rural constituencies such as mine, where we already face economic hardship, higher energy costs and an ageing population, the burden is even heavier. Families speak of loved ones who will put on another jumper and coorie under as many blankets as they can while they ration their heating so that they can afford food; they tell us of children taking on caring responsibilities while their parents skip meals to make ends meet; or, as the research tells us, family members give up work to look after a dying loved one and end up resorting to taking out costly loans just to survive. That is not dignity, it is not compassion and it is not the Scotland that we want to be.

The research makes it clear that one in four working-age people with a terminal illness die in end-of-life poverty. Imagine that. After a lifetime of work and of paying into a system, people spend their final days worrying about bills instead of spending time with those they love. It is heartbreaking and unjust. For me, this is a social justice issue as well as a health issue.

We must be bold enough to act. Marie Curie has called for people of working age who are living with a terminal illness to receive a guaranteed state-pension-level income, as my colleague Bob Doris pointed out. I fully support that call. No one should have to beg for financial security at the end of their life. Although we might not have all the levers when it comes to social security, I wonder what the Scottish Government can do within the scope of the powers that it has and how it can apply pressure at UK level and perhaps work together with the UK Government to find a solution to that problem.

Alongside financial justice, we must look at how we care for people. For too long, our model has defaulted to hospital admission, when what people truly want, and what research shows us leads to better outcomes, is to be cared for in their own communities, surrounded by familiarity and love.

In my constituency, we see that alternative approach working in practice. Dalmellington care centre is a shining example of community-based palliative care; it is a place where compassion and professionalism meet. The centre, which is located in an area that is having to deal with entrenched poverty and which hosts one of Scotland’s deep-end general practitioner practices, allows people to receive the care that they need close to home, supported by staff who know them, who understand the realities of rural life and who work hand in hand with the families, the communities and the community services. That is an innovative alternative model of care that should be replicated everywhere.

I was proud to see that the recent Care Inspectorate report recognised the outstanding work that is being done in Dalmellington. It praised the commitment, the warmth and the dignity that are offered to every resident. That report shows what is possible when we invest in care that is local, integrated and rooted in community values. The outreach and the follow-on support that are provided are second to none, and they ensure that all incomes are maximised.

As we debate how to tackle end-of-life poverty, let us also talk about dignity in care. Let us ensure that every person in Scotland, whether they live in a city, a tenement or a small Ayrshire village, has the right to a warm home, the right to financial security and the right to a peaceful, supported death.

A society is judged not by its wealth but by how it treats its most vulnerable. If we can find the compassion to act, to guarantee financial dignity, to expand community palliative care models such as the one that is offered in Dalmellington, and to support families who give so much, we will truly build a Scotland that cares, in every sense of the word.

From the outset, my position is that I support Liam McArthur’s amendment 24, because it will allow us to put in place some more safeguards around the definition of terminal illness. In countries where such a definition is applied, we see, as Patrick Harvie just set out, that those who seek an assisted death do so at the later stages of a terminal illness.

I turn to amendment 143, which Mr Balfour has said is more of a probing amendment. If we use three months as the timeline, such a short prognosis will put people who are terminally ill in the difficult position of making a hurried decision, instead of being able to take time to consider all their circumstances.

On Daniel Johnson’s amendment on a six-month prognosis, I would defer to the committee’s stage 1 report, which set out our understanding of why a prognostic timeframe can be particularly difficult. I understand members’ desire to explore the issue but, at this stage, I would not be supportive of that. That is not to say that I will not change my position as we go forward, but clinicians who make decisions that affect access to benefits sometimes feel under undue pressure to make an assessment of a prognostic timeframe. That can also lead to a situation in which, although there is no clear prognosis, people are given a time limit that might not be realistic. We are starting to funnel people down a path.

We have heard from Liam McArthur about the differences. I agree that people who are terminally ill will, by definition, probably be considered to be disabled, too. However, Liam McArthur’s amendment 24, which excludes people who have only a disability or a mental health condition, would put in further safeguards.

At stage 1, clinicians and practitioners from Australia warned us about the limitations and difficulties of the six-month prognostic timeframe, which, as set out by Liam McArthur, specifically excluded some people who had neurological conditions.

I wonder what your thoughts are on section 7, which places a duty on registered medical practitioners, during the first declaration, to discuss palliative care and any other care that might be available to that individual. That would allow the individual to make an informed decision about any palliative care plans or future care planning that could be made. That is a safeguard; that will be discussed at that point. However, if you were to tie that to eligibility criteria, that person would not have the autonomy to say, for example, that they did not want those plans to be made. Indeed, when timeframes are really short, that might preclude somebody from accessing the supports that are available under the bill.

I want to spend a little time looking at the definitions. We have touched on that aspect quite a few times this morning, but it would be helpful if we had an understanding of where each witness sits on them. I will start with the definition of “sustainable development”. Section 2 of the bill gives a definition that was inspired by the 1987 report “Our Common Future”. It states:

“‘Sustainable development’ is development that improves wellbeing in the present without compromising the wellbeing of future generations.”

Kristers Lukins touched on the Scottish Youth Parliament’s work to look at what sustainable development means to young people, and I will give him an opportunity to come back in. First, however, I want to hear from the other witnesses about what they feel about the definition of “sustainable development” as set out in the bill. Perhaps Frances Guy can start.

Lloyd, do you want to comment from a Scottish Environment LINK perspective?

That is very helpful. I had a question about how we could make the bill stronger to show that we have to pay due regard to planetary boundaries and environmental limits and to make that explicit link. Kristers and Skye, from the perspective of the Scottish Youth Parliament, is that something that you thought about when you worked through this with MSYPs? Did you consider how we could make the links between wellbeing and sustainable development and the planet?

Thanks for that.

Frances, you started the evidence session by speaking about the need for human rights in this regard and about the UN sustainable development goals. Does the bill present an opportunity to weave a thread through all those things to achieve real coherence with regard to how we conduct ourselves, before future generations have to deal with what we have perhaps not dealt with?

That is helpful. Perhaps Adam Milne would like to comment from a Carnegie perspective.