Susan Lowes is Marie Curie Policy and Public Affairs Manager, Scotland. Here she writes about the need to change the culture around death and dying.
Scotland is a nation rich in culture and traditions and there is a lot to be celebrated. There is Hogmanay, Highland Games and Common Ridings. There is tartan, haggis and Irn Bru. But often culture can be negative, leading to stigma and discrimination. Scotland is still sometimes known as the sick man of Europe. In fact, last month, the Times called Scotland the dying man of Europe.
Scotland’s health profile is well-known, not least for the inequality that exists in outcomes between the most and least advantaged people in society. Last month the Scottish Government published its Public Health priorities for Scotland, which has tackling health inequalities at its heart. Quite rightly so; we should have an ambitious programme of public health reform with health inequalities at the forefront. And yet, it feels as though it falls short.
It is hard to disagree with the six principles, they are all about protecting people, preventing ill-health and living longer. Herein lies the issue though. Everyone gets old and everyone dies. Not everyone will need to use health and social care services throughout their lives, but the clear majority will when they die.
A good death, where there is a plan in place for the type of care you want, where your loved ones know what your wishes are, where you are treated with dignity and respect, can make all the difference not only for the person, but also those that are left behind. Research from Robert Gordon University has mapped the socio-economic costs of bereavement in Scotland and its impact on people’s life chances. This can have far-reaching effects from mental health issues to poor educational attainment and young offending in cases of childhood bereavement. This is something we need to get right.
However, social and cultural change in Scotland has led to a negative culture when it comes to death. People are no longer comfortable talking about dying, death and bereavement. This is partly because we are living longer and it is seen as more remote, but also partly because we have medicalised death. Many people see it as a failure of health and social care professionals. This has created a stigma in Scotland, and unrealistic expectations of the care we want for ourselves and our families. Common language has evolved around ‘fighting to survive’ which often means that people have treatments that they do not want, hospital admissions that are not necessary, and care that does not reflect the reality of their situation.
At Marie Curie, we are disappointed that Scotland’s public health priorities do not tackle some of the negative, and often unintended, cultural norms that we experience every day. Culture is not just about access to the arts, it is a part of everyday life for everyone. It has the capacity to repress, but it also has the power to transform.
If we can change the culture around dying, death and bereavement, creating public openness, awareness and acceptance, we can hopefully start to remove some of the fear. We can help to make sure people themselves have better experiences, in whatever setting is right for them and possible in the context of their care. That also can have positive impacts on those left behind and how they deal with their grief and bereavement.
Scotland’s public health priority document may have missed its opportunity as a catalyst to help us talk more about our dying days, but there is still work that can be done. The Scottish Government is currently consulting on its Culture Strategy for Scotland. We will be responding to the strategy in terms of how access to the arts and creative activities can have a positive impact on terminally ill people, their families and carers. However, there is a much wider issue and opportunity to change our culture to transform people’s lives and deaths. This needs to be a priority.
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