Cathy Rentzenbrink, aged eight, pictured with Matty, seven, in 1981. Photo courtesy of Cathy Rentzenbrink
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A fate worse than death: when modern medicine's instinct to save is misplaced

When is it better to die than live?

The Last Act of Love: the Story of My Brother and His Sister
Cathy Rentzenbrink
Picador, 213pp, £14.99

Bookshop shelves are groaning with “tragic life stories” but Cathy Rentzenbrink’s The Last Act of Love is in a different class. It tells the story – simply and elegantly, and written quite without self-pity – of how her brother, Matty, was knocked down by a hit-and-run driver and suffered a severe head injury at the age of 16. After emergency brain surgery he was left in a persistent vegetative state (PVS). In PVS, patients show no sign of awareness or response to the outside world and make no voluntary movements, even though their eyes are open:

I sat next to Matty and looked into his eyes, their awful blankness. There was no sparkle, no sign that anything was going on. I held his hand and told him bright and cheerful lies about France, but I knew there was no longer any point in talking to him. He was gone. I now felt more sure than ever before that it would have been better for him, better for everyone, if he’d died on the night of the accident.

Eventually, after eight years, his family obtained judicial permission to withdraw “clinically assisted nutrition and hydration” – to stop giving him food and drink through a tube inserted into his stomach – and he died.

The book is profoundly moving in its descriptions of the initial shock after Matty’s head injury, the false hope for a good recovery and the mental and emotional distortions and paralysis that come from loving somebody who is neither dead nor really alive. It was an act of great bravery and love to let him die but it felt like murder. “I feel damaged by the fact I wanted his death,” she tells a friend. “It’s really bad for your soul somehow, it goes against what you think you should be like and what you think you should want as a person.”

As is so often the case, the true victims of severe brain damage are the patient’s family. Love can come at a terrible cost. Rentzenbrink’s love for her brother came close to wrecking her own life because of the utterly unnatural situation in which she and her parents found themselves, but it took many years for her to understand this. Towards the end of the book she opens the box containing Matty’s hospital reports and the mementos of his life: 

In all the medical reports . . . in the box of despair there are occasional mentions of me, of my psychological problems, of my state of mind, of how I was finding his condition difficult to come to terms with. Reading this report [from the Royal College of Physicians about PVS], I realised that there was nothing unusual in that, there was nothing unusual about me, there was nothing unusual about my family, except our exposure to a desperately cruel and unusual situation.

It is a great achievement to transform such a terrible, indeed grotesque, story – one of a kind with which, as a neurosurgeon, I am painfully familiar – into something rather beautiful and uplifting. Rentzenbrink’s story is also about the way in which modern medicine does not always have benign results and the difficulty our society has in facing up to death, and to the reality that there are fates worse than death.

Dying from dehydration is quite a slow process and patients in PVS do not lose reflex or involuntary movements. As they slowly die, they can “exhibit signs of phy­siological distress which may give the appearance of suffering even when the patient himself/herself is unaware” (in the words of the Royal College of Physicians), and so the process can be harrowing for those watching it. That the law dictates that death in these circumstances must be achieved in such an unpleasant way – there are many kinder and quicker methods – shows our inability to escape our deep, atavistic fear of death, a fear that so often inflicts great suffering on the dying (and the family).

Patients with PVS (it is estimated that there are 4,000 in the UK) are a product of modern medicine. Perhaps one should call them the by-product, or collateral damage, of hope. Doctors and patients’ families alike have great difficulty in accepting that there is little chance of a good recovery after a catastrophic head injury. As a result, patients with very severe injuries are treated in the acute phase – with surgery, with ventilation, with tracheostomy – and survive, whereas in the past they would die within hours or days of the injury. Once the crisis is past, it is likely that the patient will survive, even if they remain profoundly disabled, either in a “minimally conscious state” or in PVS. The families can be forgiven for finding it hard to accept that the person they love is better off dying, but in the case of the doctors the situation is much more complex.

When somebody suffers a severe head injury he or she usually is sent to a major neurosurgical unit; there are about 34 of these in the UK. Usually he or she will already have been placed on a ventilator (a life-support machine) by paramedics at the site of the accident. This staves off death (or further brain damage) so that an emergency brain scan can be done. This in turn will often show that, with treatment, the patient will probably survive, but in a brain-damaged state, and without it will probably die.

When I was on call for emergencies, often I would be rung at night by my juniors about patients who had suffered such injuries, or strokes. Emergency brain surgery is very simple – it involves drilling holes in the skull and draining out blood – and is well within the competence of most junior doctors. The question of whether to operate to try to save the patient’s life, however, is much more difficult.

Occasionally the family (which often is not available in time) will express a strong preference about what should be done, or the patient might even have left an advance directive (something we all should do), but usually family members will be entirely dependent on the doctors as to how to proceed. I would look at the brain scans over the internet on my computer and then, like Nero at the Games, give a thumbs-up or a thumbs-down. I would have to make some kind of prediction as to what kind of recovery the patient might make. Naturally, I would err on the side of caution and hope and often tell my junior down the phone to operate. But sometimes I felt that the patient was probably better off dying.

These are not easy decisions to take. If I told my juniors to operate I would go back to sleep; if I told them not to operate I would lie awake, worrying that I might be wrong. Furthermore, I was often faced with a long and difficult operating list in the morning and the patients on that list needed me to be rested and alert.

It is always easier to treat than not to treat. When I was a young consultant I would advise surgery in far more cases than I did when I became older and more experienced, having by then occasionally seen the awful long-term consequences of my decisions. I have observed the same process at work among my junior colleagues; it is frequently said that, with age, neurosurgeons become more “conservative”. We can rarely predict the future with certainty but if doctors make their decisions solely on the basis of certainty – if we must treat patients even where there is only a minimal chance of success – we can inadvertently cause great suffering. We must learn to accept, in effect, that it is better occasionally to be wrong and to lose one patient who might have made a good recovery than always to be right: to treat everybody and produce many catastrophically disabled people. The difficulty, of course, lies in knowing where to draw the line. How many good results justify one bad result? And what constitutes a bad result?

This book should be read by everybody who has either personal or professional experience of severe head injury and, indeed, by anybody who is concerned by the way our society has such difficulty in accepting that meaningful life is about more than just a beating heart.

Henry Marsh’s “Do No Harm: Stories of Life, Death and Brain Surgery” won the PEN Ackerley Prize and the South Bank Sky Arts Award for literature. He will appear at the Latitude Festival (16-19 July) in association with the New Statesman and the Wellcome Trust.

This article first appeared in the 26 June 2015 issue of the New Statesman, Bush v Clinton 2

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We knew we’d become proper pop stars when we got a car like George Michael’s

“That was George Michael!” we both shouted. “And he was driving the car we want!”

One of the clichés about celebrity life is that all celebrities know each other. Back in the Eighties, when we were moderately famous, Ben and I did often bump into other famous people, and because of mutual recognition, there was a sort of acquaintance, if not friendship.

There was a random element to it, as well. Some celebrities you might never catch a glimpse of, while others seemed to pop up with an unexpected regularity.

In 1987, the car we drove was a 1970s Austin Princess, all leather seats and walnut dashboard. In many ways, it symbolised what people thought of as the basic qualities of our band: unassuming, a little bit quirky, a little bit vintage. We’d had it for a year or so, but Ben was running out of patience. It had a habit of letting us down at inconvenient moments – for instance, at the top of the long, steep climbs that you encounter when driving through Italy, which we had just recklessly done for a holiday. The car was such a novelty out there that it attracted crowds whenever we parked. They would gather round, nodding appreciatively, stroking the bonnet and murmuring, “Bella macchina . . .”

Having recently banked a couple of royalty cheques, Ben was thinking of a complete change of style – a rock’n’roll, grand-gesture kind of car.

“I wanna get an old Mercedes 300 SL,” he said to me.

“What’s one of those?”

“I’ll let you know next time we pass one,” he said.

We were driving through London in the Princess, and as we swung round into Sloane Square, Ben called out, “There’s one, look, coming up on the inside now!” I looked round at this vision of gleaming steel and chrome, gliding along effortlessly beside us, and at the same moment the driver glanced over towards our funny little car. We made eye contact, then the Merc roared away. It was George Michael.

“That was George Michael!” we both shouted. “And he was driving the car we want!”

We’d always had a soft spot for George, even though we seemed to inhabit opposite ends of the pop spectrum. He’d once been on a TV review show and said nice things about our first album, and I knew he had liked my solo single “Plain Sailing”. We’d done a miners’ benefit gig where Wham! had appeared, slightly out of place in their vests, tans and blond bouffants. There had been a bit of sneering because they’d mimed. But I remember thinking, “Good on you for even being here.” Their presence showed that being politically active, or even just caring, wasn’t the sole preserve of righteous indie groups.

A couple of weeks later, we were driving along again in the Princess, when who should pull up beside us in traffic? George again. He wound down his window, and so did we. He was charming and called across to say that, yes, he had recognised us the other day in Sloane Square. He went on to complain that BBC Radio 1 wouldn’t play his new single “because it was too crude”. “What’s it called?” asked Ben. “ ‘I Want Your Sex’!” he shouted, and roared away again, leaving us laughing.

We’d made up our minds by now, and so we went down to the showroom, flashed the cash, bought the pop-star car and spent the next few weeks driving our parents up and down the motorway with the roof off. It was amazing: even I had to admit that it was a thrill to be speeding along in such a machine.

A little time passed. We were happy with our glamorous new purchase, when one day we were driving down the M1 and, yes, you’ve guessed it, in the rear-view mirror Ben saw the familiar shape coming up behind. “Bloody hell, it’s George Michael again. I think he must be stalking us.”

George pulled out into the lane alongside and slowed down as he drew level with us. We wound down the windows. He gave the car a long look, up and down, smiled that smile and said, “That’s a bit more like it.” Then he sped away from us for the last time.

Cheers, George. You were friendly, and generous, and kind, and you were good at being a pop star.

Tracey Thorn is a musician and writer, best known as one half of Everything but the Girl. She writes the fortnightly “Off the Record” column for the New Statesman. Her latest book is Naked at the Albert Hall.

This article first appeared in the 12 January 2017 issue of the New Statesman, Putin's revenge