Part of the debate – in the Scottish Parliament at on 16 November 2023.
Sandesh Gulhane
Conservative
I thank Paul O’Kane for securing the debate.
I draw members’ attention to my entry in the register of members’ interests. I am a practising national health service general practitioner, and I directly treat people with terminal illness.
Only two things are certain in life: death and taxes. Although there is often no holding us back from talking about His Majesty’s Revenue and Customs, most of us are not very good at discussing death. Have we told our kids our wishes? Do we know our parents’ wishes? Do we even use the words “death” and “dying” instead of euphemisms?
Death is part of life and we all want people to have a dignified death, with the space to get their affairs in order, say their goodbyes and die peacefully and free from pain. Sadly, not everyone in Scotland is at peace when they die. For those in our communities who are living with a terminal illness and are at their most vulnerable, the financial impact of their prognosis can drain a family’s savings, greatly increasing the risk for many of falling below the poverty line. For people with little or no means, or for those who have lost their job because they are sick, terminal illness is not an equaliser.
The risk of poverty is particularly pronounced for women, Scots from minority ethnic communities and parents with young children. Some even incur debts that will be passed on to their loved ones after they die. According to research with Scots in the last year of their lives, which was carried out by Marie Curie in 2019, 26 per cent died in poverty—that is 2,800 working-age Scots. The charity Crisis tells us that, in 2021, 250 people in Scotland died while homeless. Statistics such as those are important because they provide a sense of scale, but behind every percentage point there are people, families and friends.
“The Cost of Dying” exhibition on display here in Parliament shows lived experiences with poignant and often worrying case studies of those who are trying to make ends meet so they can live the remainder of their lives in dignity. I congratulate the University of Glasgow and Marie Curie on delivering the impactful dying in the margins project, which illustrates the profound effect that socioeconomic circumstances can have on end-of-life experience. In Parliament today, we welcome friends and family who participated in that project: Max’s friend Derek, Stacey’s husband Joost and Linda’s daughter Nicola among others.
The question for us here is how to respond in concrete terms to that study. This Parliament can act in areas of devolved policy, and Marie Curie provides a list of suggestions that are well worth consideration, which include financial support for childcare for all terminally ill Scots, so that families can make the most of the time that they have left together; improved financial support for carers, so that they can focus on looking after their loved ones and making the most of the time that they have left together, without worrying about their finances; and ensuring that terminally ill people are offered timely and affordable adaptations to their property so that they can live the rest of their lives at home, if they wish. Local authorities can review eligibility for council tax support and for discretionary housing support.
As parliamentarians, we must always strive to do better. Having choice, control and the comfort of a dignified death is crucial for the terminally ill, who have already been robbed of so much by their illness. We can do more to help our fellow Scots to make memories with their loved ones and to live as well as they can, for as long as they are able to.