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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What we can learn from Harry Potter’s “mad women”

We revist the “mad” women of Harry Potter, both good, bad and somewhere in between.

Madness is a fluid thing. To be “crazy” has no fixed meaning, it changes to fit the definition required – whether that’s a quick fix to deflect blame for the powerful (think racism, terrorism or fascism damagingly dismissed as “mental illness”) or a cunning way to dismiss the powerless: She’s not telling the truth! She’s crazy! Madness may be utterly meaningless, but it has infinite power.

In the often unreal space of mental illness, the fantasy world of books, movies and television can intertwine with one’s lived experience. I hated reading until Harry Potter came to me as a traumatised ten-year-old. In between bouts of psychosis and extreme suicidal ideation I would read, and read, and read. They were big books too, so thick, no picture – but it was worth it. A whole world just for me! Now isn’t that magical?

As we approach the twentieth anniversary of this wonderful, wizarding world, I find myself returning to the “mad” women of Harry Potter, both good, bad and somewhere in between. Bellatrix Lestrange, Moaning Myrtle, Luna Lovegood, Professor Trelawney... Who are these characters beyond their exaggerated mannerisms and super cute style? What are they telling us about the cultural codes of madness and the construct of the “mad woman”?

Because despite being more distressed when I was sorted into Slytherin than when I was presented with a personality disorder, pop culture and medical realities cross over in interesting and unexpected ways. These culturally agreed upon outfits of “madness” are retold and remade over and over. Who can wear the costume of madness, and in what way, in the popular imagination?

Luna Lovegood

First, let’s go for one of for one of the “good guys”. “Looney Luna”, the dazed Hogwarts student as pale as a full moon, is portrayed in the films with a quietly mesmerising performance from Evanna Lynch. Bullied for her “horrid” dress sense and marked out for her “distinct dottiness”, Luna was one of my teen idols. Young, brilliant, equally skilled at making novelty hats, riding thestrals and saving the wizarding world, Luna is up there with the best of them!

An heiress to madness, as the child of Xenophilius Lovegood, notorious for his “lunatic rag”, The Quibbler (known for its coverage of elusive magical creatures and defiantly radical politics), Luna, in her ability to embrace the impossible, is often characterised as an ‘anti-Hermione’, she is more than a mere shadow of another girl.

After all, in inhabiting such a distinct world of her own creation, shaped both by the grief of losing her mother and her own personal vision, it could be easy to dismiss her as a mere manic pixie dream girl, especially when considering her ability to recognise and support Harry’s struggles when others could not, but Luna’s character is more robust than these misogynistic tropes. Not only does she save Harry’s reputation with an interview in the much-maligned Quibbler (another reminder not to judge the ‘loony’ on first glance), she serves as a dedicated member of Dumbledore’s Army, acting as an essential force in The Battle of the Department of Mysteries, The Battle of The Astronomy Tower and of course, the final Battle For Hogwarts. Yes, her eccentricities are dismissed as ‘loony’, but they belong to a heroic character in possession of creativity, wit, intellect – and, of course, unique style. (A necklace made of Butterbeer corks, anyone?)

Pale, pop cultural misfits are funny things. Winona Ryder, Audrey Tatou in Amelie, Zooey Deschanel, Kate Bush… sometimes outsiders are more insiders than you’d realise. Nonetheless, I will fangirl for Luna forever.

Professor Sybill Trelawney

Perhaps seen as another antagonist to Hermione’s bookish rationality, and an adult mirror for Luna’s own dream logic, Professor Sybill Trelawney is a shining star in a long line of magical “mad women”. Can’t you just imagine her and the Log Lady from Twin Peaks bonding over a pint of Pumpkin Juice? The links between madness and the mystic run deep, it is no coincidence that Sybill’s Grandmother takes the name of Cassandra. Who would believe a mad woman? But who but a mad woman can see the truth in a chaotic world? (Luna, too, is characterised as keen observer, after all.) The pop cultural mystic provokes so many questions in regards to the mythology of madness (an often unhelpful fetish for those of us who are actually struggling with our mental health) and broader questions of believing women when we are constantly dismissed as irrational, ridiculous or unreliable.

Though her exaggerated costume and “woolly” predictions could reduce her to a mere comic support act, Sybill has far more nuance than the (seemingly) ridiculous individual we are presented with in the start of the third book. Throughout the series, her character deepens and develops: we see a heartbreakingly vulnerable side to her in the fifth book, and though her gift for The Inner Eye may have been dismissed early on, her predictions eventually become essential in defeating Voldemort. Sybill even plays a fearless role in The Battle of Hogwarts, knocking out Death Eaters with her crystal balls. One of Harry Potter’s many lessons is not to dismiss unconventional women like Sybill too quickly. As a result, Sybill stands out as a beautiful branch on the tree of mystic weirdos. Who knows what miraculous things we might discover if we take the time to listen to her?

Moaning Myrtle

Existing as an exaggeration of teen girl melancholy, Moaning Myrtle is trapped in the school that bullied and eventually killed her. She’s pictured as forever crying in the girls’ bathroom on the first floor, unwanted and unmissed, with even her attempt at high school revenge washed out. There’s been so many perceptive conversations on the post-Kraus female gaze: wouldn’t it be interesting to locate Myrtle within them? She’s depicted as crushing on any boy that comes her way (be it Harry, Cedric or Malfoy), though the only thing she has to offer them is a toilet. Even her acne is “morose”.

This is a world where Janis Ian’s “At Seventeen” plays on loop for eternity, effortlessly brought to (after)life by the brilliant Shirley Henderson, Queen of crying in public bathrooms. I’ll leave with my favourite quote that could one up even the most contentious Lana Del Rey soundbite:

Myrtle: “I wasn’t paying attention. Peeves upset me so much I came in here and tried to kill myself. Then, of course, I remembered that I’m — that I’m —”

Ron: “Already dead.”

Bellatrix LeStrange

And then we have Bellatrix: crazy in love with the Dark Lord himself, escaped inmate from a madness inducing institution, and a total Amy Winehouse prototype in her aesthetic of long black hair, low voice and heavily-lidded eyes.

It’s striking how frequently certain traits reoccur in pop culture when we envision the criminally insane, especially when it comes to women. Much like Harley Quinn of the Batman universe or Drusilla in Buffy, Bellatrix talks in the bizarre baby talk so popular with the fantasy mad woman. We are presented with a woman infantilised. This is also at play in her relationship with Voldemort: she’s totally dependent and utterly out of control.

If we can read Luna and Sybill as playful antagonists to such rational figures as Professor McGonagall and Hermione, Bellatrix serves as an active threat against Molly Weasley, the only true maternal figure Harry really has in the series. Sirius’ face may be the one burnt off the House of Black’s family tree, but it is Bellatrix who is the real destroyer of families: from the torture of Neville Longbottom’s parents, to the murder of her cousin (and Harry’s Godfather) Sirius Black and her own niece, Nymphadora Tonks. She even kills Dobby! In setting Bellatrix up as a total monster, it’s unsurprising that she became the only character to earn an all caps curse word in this child-friendly book. Because female evil has a particular kind of power, it provokes disgust in ways that others do not. Consider Umbridge, another reigning villainess with her hot pink get-ups and kitsch cat study, a sort of Nurse Ratched of Hogwarts. To use the building blocks of femininity to make a monster harbours true horror, so it is the female villains, both mad and bad, that stand out most sharply when it comes to Harry’s nemeses.

In the exaggerated fantasy world of Harry Potter this cast of mad women may seem like simplistic set characters of quirky creatives, cry-babies, unrealizable narrators and outright she-Devils. However, if we look closer at these ghostly voyeurs, escaped prisoners and outright eccentrics we can position these characters within a longer cultural history of ‘insane’ and outrageous women. Madness is often presented as a sort of magic and it is these mad women, existing in the already improbable space of witches and wizards, that push even further against our received ideas of rationality, respectability, even human goodness. Pottermore may have sorted me into Slytherin, but it is the Hogwarts House of Mad Women whose robes I choose to wear.

Now read the other articles included in the New Statesman’s Harry Potter Week.

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