A fate worse than death: when modern medicine's instinct to save is misplaced

When is it better to die than live?

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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 appears in the 26 June 2015 issue of the New Statesman, Bush v Clinton 2

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