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The voice of Scotland’s vibrant voluntary sector

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Why palliative and end of life care is everyone’s business

This opinion piece is over 8 years old
 

​ Richard Meade of Marie Curie says the government needs to invest in tackling the stigma of talking about death and dying

Far too many of us simply do not talk about dying and death.

I’m not going to shatter any illusions when I say that we will all die. So what is it about death and dying that we try to avoid talking about? And why when someone knows that they’re going to die, and we might be able to support that person, do we find it so difficult to talk?

It is a stigma that we, along with The Good Life, Good Death, Good Grief alliance of organisations and charities, undertake various activities to try to address. However, it is only when there is real investment in a government-led public health campaign that we will start to see communities have open and honest conversations about dying and death and we will feel empowered to support each other.

Why palliative and end of life care is everyone’s business

If someone is diagnosed with a terminal illness today it doesn’t necessarily mean they’re going to die tomorrow, or next week, next month or even next year

Richard Meade

If someone is diagnosed with a terminal illness today it doesn’t necessarily mean they’re going to die tomorrow, or next week, next month or even next year. Yes they’ve been told their illness is likely to lead to their death, but it doesn’t come with an expiration date.

Often the delivery of a terminal diagnosis is thought of as a rapidly approaching death sentence and palliative care as something that only benefits people at the very end of life. While this can be the case, especially with traditional cancer-orientated notions of palliative care, it is not always true when it comes to other terminal illnesses. Some disease trajectories are hard to predict and people can live for many years receiving palliative care in a number of different settings, including at home, when needed. Palliative care is about improving quality of life and continuing to support people to live well through the course of their condition.

At Marie Curie we talk about people living with a terminal illness, not dying. Palliative care can play a huge part in this, helping people to live as well as possible, for as long as possible. Palliative care and what it can achieve is often misunderstood. As with the expression terminal illness, there’s a misconception that palliative care only benefits people who are in the final weeks or days of their lives. We know that this can be a factor in thousands of people missing out on palliative care right now in Scotland.

Palliative care is holistic care and can help with psychological, social and spiritual needs that people have alongside their medical treatment. Offered early enough it can help patients and families to live as well as possible in the time that they have left and can make a big difference in their experience. Our explanation of what palliative care is and the Scottish palliative care guidelines go into more detail.

We need to reduce the awkwardness about talking about death and dying, to challenge public perceptions and understanding and to enable a more public debate of the issues. Join the conversation at mariecurie.org.uk/change.

Richard Meade is Marie Curie's head of policy and public affairs, Scotland.