Mary Wakefield: Don't switch off the will to live

Share
Related Topics

Dr Adrian Owen walks down the hospital corridor towards patient Y. Go on, picture it in your mind. There he is, talking to patient Y – though Y lies inert, assumed to be in a vegetative state. Dr Owen explains to Y that they're going to try to communicate with him. Think of playing tennis if you want to say yes, and think of wandering around your home for no, he says, then slides Y head first into the fMRI machine.

Dr Owen runs through the yes/no questions, not holding out any hope, but soon the images on the fMRI screen lead him to an incredible conclusion: Y is responding! Y is answering yes and no correctly, he's still in there, conscious!

Now pause, replay that last scene: the brain activity showing on the fMRI screen, Owen's excitement. What do you feel? You feel elated, right? Dr Owen reached in and found Y buried deep inside the rubble of a collapsed body – it's a miracle.

This is the discovery of life against the odds. And I think that throughout the ongoing debate about vegetative patients, and locked-in survivors, the most important thing to hold on to is one's first reaction to this: joy.

Afterwards comes fear. What if it happens to me? It's not an unreasonable worry. There are tens of thousands of people in vegetative state – most of them the survivors of strokes – and perhaps as many as 20 per cent of these still conscious. It's an awful thought for the able-bodied; easy to see why most people think they'd rather be dead. "My only thought would be KILL ME PLEASE!"

"I can't imagine a more hellish existence," says the first comment on the BBC website. "Do everyone a favour and simply turn the machine off," says the next, and the next, and the next. After that, there's a discussion about living wills – and consensus: we'd all better make one now; after all, who'd want to live like that?

Here's the simple answer: they do. The locked-in people do. They'd rather be alive. I'm not making it up. I'm not some lunatic sadist bent on keeping suicidal paralytics conscious. I'm just facing facts. There's every reason to believe that people with locked-in syndrome value their lives as much as you do yours, and that unless they're in chronic pain, they mostly don't want to be bopped on the head and put out of a misery you imagine they feel.

It's extraordinary but true. There was a survey done a few years ago of the members of the French Association of Locked-in Syndrome and during the survey they all rated their own mental health. More than 90 per cent of all members said they were glad to be alive; nearly half stated that they were actually in a good mood most of the time; 73 per cent of them looked forward to outings and regularly met friends. It's a crazy, amazing testament to our natural resilience. Only 12 per cent of members reported feeling depressed, which is roughly the same answer you'd get from the walkie-talkie population, and a much happier result than if you polled teenagers alone.

We've got to realise that we can't extrapolate from how we think we'd feel to how we would actually feel if we were in patient Y's situation. It's a thought that perhaps those recent advocates of euthanasia, Martin Amis and Terry Pratchett, could bear in mind too.

Remember Jean-Dominique Bauby? He was the former editor of French Elle, who woke up from a coma and wrote his autobiography, The Diving Bell and the Butterfly, by blinking each letter out with his left eyelid. In the film made of his life, the actor Mathieu Amalric asks a nurse if she would end his life. In reality, his long-term girlfriend swore that Bauby never asked to die. So it was just the scriptwriter, not Bauby, who couldn't imagine wishing to carry on. He realised perhaps that it would be easier for the cinema audience to imagine that locked-in patients don't want to carry on – in some ways, actually less frightening.

A journalist called Laura Spinney has written about another locked-in Frenchman, Dominique Toussaint. Toussaint was left paralysed by basilar artery thrombosis but, like Bauby, could move his eyes. Unlike Bauby, Toussaint did campaign to be allowed to die, but when he eventually found a doctor who agreed to help, he was so surprised he asked his children what to do. We want you alive, they said. Absolutely. Toussaint took them at their word and told the doctor to stand down. He's still alive today. All he wanted, he says he now realises, was the choice.

Did Bauby, does Toussaint wish he'd written a living will? No. Does patient Y? Probably not. However unimaginable it may seem to us, inside his mind he's probably still values the life he's got. So we owe it to poor Y not to let our fear trump that first instinct: where there's life there's hope.

Why must people speculate about George?

*George Clooney's Up in the Air co-star Vera Farmiga has told an online gossip site that he's a fantastic kisser. "Hey, I'm a girl," she said, "so my main motivation to accept the role was the fact I got to kiss George!" Girl after girl claims that George is hot stuff – so what's with all the rumours that he's gay? The thing is, it's not just George; it's pretty much every good-looking, high-profile man in movies. If the gossip mill is to be believed, there's not a straight man among them. I've heard it said with absolute conviction about everyone from Robert Redford to father-of-three Brad Pitt. It never stops, no matter how many beautiful girls swear the opposite. But why?

Police can't be everywhere

*I'm naturally inclined to have a go at the police, but I think Julie Spence, the chief constable of Cambridgeshire, needs support. She's been criticised because her officers failed to respond immediately to 18-year-old Sadegh Ghanbara's 999 call for help, and Ghanbara ended up badly beaten. Spence's response has been not to apologise, but to point out that the police can't attend every call – especially if, as in this case, the caller isn't reported to be under immediate threat. Spence has been attacked for sounding callous, but I think she's right. We can't demand that bobbies are permanently on the beat and that they're waiting in cars ready to chase up every 999 call. Far from being indifferent, I think chief constable Spence sounds as if she just cares enough to be honest.

Harry Potter's new diet

*The government's plans to allow product placement on TV but to forbid promoting unhealthy brands seems to sum them up perfectly: avaricious, but still as keen to nanny us as ever. But if it's best to ban certain brands from TV, for fear us muppets will grow more obese, what about fiction, Mr Brown? Harry Potter and his mates must be prevented from pushing chocolate frogs into their faces all day and forced to set an example. In the interests of our children's health, I'm sure JK would play ball. Harry Potter and the Order of a Low-Fat Caesar Salad, for example, or Harry Potter and the Goblet of Milk.

Back on the mad marriage-go-round

*Against my better judgement I watched Celebrity Big Brother and against my better judgement I started to like nice, dim, orange Alex Reid. Which is why, against my better judgement I'm going to feel sorry for the poor sap when Katie Price, aka Jordan, dumps him in about, oh, three months' time. She's already showing signs of getting bored: moaning on her honeymoon, getting moody. Katie's problem is that she's much cleverer than the men she marries – but then, no bloke with half a brain would be silly enough to get serious about her. It's Jordan's own peculiar Catch-22.

React Now

  • Get to the point
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
iJobs Job Widget
iJobs General

Recruitment Genius: In House Counsel - Contracts

Negotiable: Recruitment Genius: This leading supplier of compliance software a...

Recruitment Genius: Associate System Engineer

£24000 - £30000 per annum: Recruitment Genius: The Associate System Engineer r...

Recruitment Genius: Executive Assistant

Negotiable: Recruitment Genius: An Executive Assistant is required to join a l...

Ashdown Group: Marketing Manager - B2B, Corporate - City, London

£45000 - £50000 per annum + benefits : Ashdown Group: A highly successful, glo...

Day In a Page

Read Next
Zoe Sugg, aka Zoella, with her boyfriend, fellow vlogger Alfie Deyes  

If children are obese then blame food manufacturers, not Zoella

Jane Merrick
Amos Yee arrives with his father at the State courts in Singapore on March 31  

Singapore's arrest of a 16-year-old YouTuber is all you need to know about Lee Kuan Yew's legacy

Noah Sin
General Election 2015: The masterminds behind the scenes

The masterminds behind the election

How do you get your party leader to embrace a message and then stick to it? By employing these people
Machine Gun America: The amusement park where teenagers go to shoot a huge range of automatic weapons

Machine Gun America

The amusement park where teenagers go to shoot a huge range of automatic weapons
The ethics of pet food: Why are we are so selective in how we show animals our love?

The ethics of pet food

Why are we are so selective in how we show animals our love?
How Tansy Davies turned 9/11 into her opera 'Between Worlds'

How a composer turned 9/11 into her opera 'Between Worlds'

Tansy Davies makes her operatic debut with a work about the attack on the Twin Towers. Despite the topic, she says it is a life-affirming piece
11 best bedside tables

11 best bedside tables

It could be the first thing you see in the morning, so make it work for you. We find night stands, tables and cabinets to wake up to
Italy vs England player ratings: Did Andros Townsend's goal see him beat Harry Kane and Wayne Rooney to top marks?

Italy vs England player ratings

Did Townsend's goal see him beat Kane and Rooney to top marks?
Danny Higginbotham: An underdog's tale of making the most of it

An underdog's tale of making the most of it

Danny Higginbotham on being let go by Manchester United, annoying Gordon Strachan, utilising his talents to the full at Stoke and plunging into the world of analysis
Audley Harrison's abusers forget the debt he's due, but Errol Christie will always remember what he owes the police

Steve Bunce: Inside Boxing

Audley Harrison's abusers forget the debt he's due, but Errol Christie will always remember what he owes the police
No postcode? No vote

Floating voters

How living on a houseboat meant I didn't officially 'exist'
Louis Theroux's affable Englishman routine begins to wear thin

By Reason of Insanity

Louis Theroux's affable Englishman routine begins to wear thin
Power dressing is back – but no shoulderpads!

Power dressing is back

But banish all thoughts of Eighties shoulderpads
Spanish stone-age cave paintings 'under threat' after being re-opened to the public

Spanish stone-age cave paintings in Altamira 'under threat'

Caves were re-opened to the public
'I was the bookies’ favourite to be first to leave the Cabinet'

Vince Cable interview

'I was the bookies’ favourite to be first to leave the Cabinet'
Election 2015: How many of the Government's coalition agreement promises have been kept?

Promises, promises

But how many coalition agreement pledges have been kept?
The Gaza fisherman who built his own reef - and was shot dead there by an Israeli gunboat

The death of a Gaza fisherman

He built his own reef, and was fatally shot there by an Israeli gunboat