Spinal column: matters of life and death by Melanie Reid

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walkway at the SECC, Glasgow

Melanie Reid’s article appeared in The Times Magazine on Saturday 19 March 2016, and is republished here with the kind permission of the author.

Spinal column: matters of life and death

‘I’m very happy to talk about death. I’ve learnt it isn’t remotely the worst thing that can happen’

An icy night in early March, and I have taken a brave pill and driven into the city alone. Now I just have to convince the security guard that there’s a parking space reserved for me and he should have been told about it. But I can’t, he hasn’t, and he’s got to follow the rules.

He wants to know what I’m here for. “The palliative care conference,” I say. “About death. Looking after people when they’re dying.” Now the poor guy, looking deeply anxious, can’t raise the barrier quickly enough. Note to self: remember that one. Dying, the indiscussible, the unmentionable, the thing we run away from, the word for access all areas.

In as cheery a way as possible, I’m very happy to talk about death. My relationship with it has been liberated, because coming abruptly face to face with mortality makes me appreciate life and self-determination more and has taught me that dying isn’t remotely the worst thing that can happen to you. I also discovered how much it helps to be open with those I love. But outside my own family, the collective public refusal to tackle these realities intrigues and worries me. Intellectual cowardice is one thing; a state of mass denial is another.

I’ve written before about David Clark, from Glasgow University, the man you might call the professor of death, and here he is in person; cheery, almost twinkly: the man quietly asking us to address what the world is going to do when the demographic tsunami of death hits. Public health and political strategy are not in touch, and our level of unpreparedness is such that we still can’t yet define a good death, one with dignity and freedom from pain, even though this is seen as a human right.

Professor Clark is a humane and balanced academic. He’s not proscriptive; he’s not advocating unpalatable solutions. He’s just asking us to talk. His role is to supply us with the facts, explore options and encourage debate. There is a crying need for global interventions. During the entire 20th century, 5.5 billion people died globally – a figure lower than the current world population. That is, more people are alive, right now, than died over a period of 100 years.

This year, about 56 million people will die, a figure that’s estimated to rise to 91 million by 2050. The number of people over 80 will have risen from 102 million (in 2009) to 395 million by 2050. Around this time it is possible that “peak death” might occur. As unrelated to “peak stuff”.

On any given day in our hospitals, one third of the patients are in the last year of their life and 10 per cent will die there. Nobody is at present discussing how to identify those people and offer what’s best for them. And this is where Professor Clark’s voice feels unique, because ordinary people have for ages outsourced death to experts – medical staff, politicians, academics, religious leaders – and such people are naturally conservative and risk-averse.

Palliative care is not developing fast enough. There is institutionalised cowardice. Which means we have lost control over the most significant event: our own death.

David Clark is effectively offering the subject back to us. The “death café” movement, giving the public a chance to chat openly, is, to use his enthusiastic expression, bubbling up.

He uses social media, has an End of Life Studies blog, attends death campfires and suggests we debate everything from “good deaths” in the developing world, to housing solutions for the elderly, to the integration of voluntary suicide, assisted dying and palliative care.

There’s another palliative care conference in London in April, with a speech entitled “Terminal sedation: euthanasia by the back door?”. Which, unless it’s deliberately provocative, strikes me as closed-minded. Wouldn’t it be more positive to call it “Terminal sedation: a kind way to a good death?”.

Or even – and I’d pay to listen – “Terminal sedation: everyone knows my time is well and truly up, just give me the drugs and let me slip away in my sleep so that I don’t have to suffer any more and the people who love me can get on with the wonderful job of living. Carpe effing diem, as they say in New York.”

But, hey, what do I know? I’m just a suffering punter, not an expert.

Melanie Reid

Spinal Column: Matters of life and Death appeared on Saturday March 19 2016 in Melanie Reid’s weekly column in The Times Magazine, and we are very grateful to Melanie for giving permission to republish it on our blog. Melanie is tetraplegic after breaking her neck and back in a riding accident in April 2010.

You can listen to the audio of David Clark’s presentation on our blog post about presenting our Global Interventions at the End of Life project at the Palliative Care Congress, where you can also view the slides and read a transcript of the presentation.

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