Hazel McHaffie

moral responsibility

Living in the face of death

Every now and then a book comes into your life that stops you in your tracks. When Breath Becomes Air is one such for me. The author, Paul Kalanathi, was a neurosurgeon and writer with degrees in English literature, human biology, and history and philosophy of science and medicine, garlanded with awards and distinctions. But it’s not so much his brilliance as a scholar or clinician that makes this a stand-out work, but his humanity, his wisdom, his reverence for life even in the face of death, his empathy with people.

His writing reminds me very much of Henry Marsh, also a neurosurgeon, who revealed with brutal honesty the price these gifted surgeons pay for the high-risk work they do, where a single tiny slip of the hand, or a wrong judgement call, can wreck a life. Kalanithi describes, clearly and poignantly, and entirely without self-pity, his own journey from medical student, through professional and powerful neurosurgeon, to helpless terminally ill patient. He died, aged just 37 years old. I wept with and for him. I am unsurprised that esteemed figures like Atul Gawande and Abraham Verghese have endorsed this book so comprehensively; all are giants among men when it comes to deep psychological truths about human beings.

As a schoolboy and undergraduate Paul Kalanathi read prolifically.  Literature, he came to see, ‘not only illuminated another’s experience, it provided the richest material for moral reflection’. Through reading and studying philosophy and neuroscience and ethics he pursued his goal relentlessly: ‘to seek a deeper understanding of a life of the mind.’  But he was all too conscious that his thinking didn’t sit comfortably in an English Department, and he simply couldn’t find the answers to where biology, morality, literature and philosophy intersected, or what makes life meaningful even in the face of suffering and death and decay. He craved direct real-life experience. And so it was that he embarked on a career in medicine, as so many men in his family had done before him.

His humanity and compassion pervade the accounts of various experiences along the way, bringing him eventually to specialise in neurosurgery. As he says: ‘While all doctors treat diseases, neurosurgeons work in the crucible of identity: every operation on the brain is, by necessity, a manipulation of the substance of our selves’. At critical junctures the question is not simply whether to live or die, but more than that, what makes life meaningful enough to go on living? I should have liked many more of his illuminating experiences, but their brevity served to spell out the pressure he was under, the limited time he had left in this world to record his thoughts.

Neurosurgery is a fiercely demanding discipline with its commitment ‘not only to one’s own excellence but to another’s identity’. As he says: ‘We [have] assumed an onerous yoke, that of mortal responsibility. Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’t ever reach perfection …’ The burden of this ‘unforgiving call to perfection’ was driven home ferociously when a friend and colleague jumped off of a high roof, killing himself, following the death of one of his patients.

But shining through all the high-powered knife-edge clinical precision is this particular doctor’s empathy and kindness. He learned that ‘the physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and his family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence’. He understood …
That  ‘a tureen of tragedy was best allotted by the spoonful‘.
That traumatised patients’ relatives wouldn’t retain devastating details in one fell swoop.
That it was irresponsible to be more precise in prognoses than you could be accurate.
That holding a patient’s hand becomes a mode of communication.
That there is more than mere biological life at stake; identity matters. ‘The call to protect life – and not merely life but another’s identity; it is perhaps not too much to say another’s soul – was obvious in its sacredness.’

Then came the devastating diagnosis of his own metastatic Grade IV cancer, and everything changed. He had ‘traversed a line from doctor to patient, from actor to acted upon, from subject to direct object’.

When Kalanithi began suffering pain in his back – pain so severe he could only curl up on the floor screaming – he rationalised away the symptoms. After all, healthy men in their thirties simply didn’t get lethal cancers, did they? Finding he was already terminally ill with extensive metastases required immense adjustments, far more disorientating and dislocating than he ever imagined. And once again he turned to literature to try to make sense of the questions raging through his mind – Solzhenitsyn, Tolstoy, Woolf, Kafka, Hemingway, Frost, memoirs of cancer patients – ‘anything by anyone who had ever written about mortality … searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again’. It was literature that brought him back to life during this time.

‘Death may be a one-time event, but living with terminal illness is a process.’

‘One chapter of my life seemed to have ended; perhaps the whole book was closing. Instead of being the pastoral figure aiding a life transition, I found myself the sheep, lost and confused. Severe illness wasn’t life-altering, it was life-shattering … My life had been building potential, potential that would now go unrealized. I had planned to do so much, and I had come close. I was physically debilitated, my imagined future and my personal identity collapsed, and I faced the same existential quandaries my patients faced … Death, so familiar to me in my work, was now paying a personal visit. Here we were, finally face-to-face, and yet nothing about it seemed recognizable. Standing at the crossroads where I should have been able to see and follow the footprints of the countless patients I had treated over the years, I saw instead only a blank, a harsh, vacant, gleaming white desert, as if a sandstorm had erased all trace of familiarity.’ And the ground was to buckle and roil again and again as the disease progressed and the patient adjusted to his new reality.

Initially, as the tumours shrank, he set his sights on returning to the operating theatre – not the recumbent form on the receiving end of invasive treatment, but the upright one wielding a scalpel. Which he did. Even though exhausted beyond measure, only overcoming the nausea and pain by iron will, he persisted, and gradually his strength and stamina improved, alongside his fluency and technique. He began taking full responsibility for his patients, working longer hours, and despite his physical problems, started to enjoy the job once again, finding true meaning in this demanding work.

The birth of a daughter, Elizabeth Acadia, brought him a sense of joy and satisfaction hitherto unknown. But when she was only five months old, at Christmas time, the cancer began to resist all forms of treatment, and Paul made the decision to devote any energy he could summons to complete his book. Decline at this stage was unexpectedly rapid, and Cady was just eight months old when Paul died in a hospital bed 200 yards from where she was born.

Poignantly, his wife, Lucy, also a doctor, appended the Epilogue to When Breath Becomes Air – a searingly painful account of his last hours and a family’s grief. In 2013, she revealed, Paul had emailed his best friend to tell him about his terminal cancer: ‘The good news is that I’ve already outlived two Brontë sisters, Keats and Stephen Crane. The bad news is that I haven’t written anything.’ He had set his sights on rectifying this omission. When Breath Becomes Air became a new way for him to help others, a contribution only he could make; at once a moving personal story, a statement about death, and an inspiration to all who read it.

This is what courage sounds like.

Ironically, I read this book on the day when one of my granddaughters sat an exam for assessing her potential for entry to medical school. One day I might give her my copy of Paul Kalanithi’s book, but it’s too raw, too harrowing, too honest about the price doctors pay, to expose her to at this stage.

 

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75 years on

6 June 1944, saw the largest combined land, air and naval operation in history; D-Day. Seventy-five years on to the day, it seems fitting that I should mark it in some way. What better for the purposes of this blog than to write about a book that challenged me in many ways to think again about what has been done in the name of honour, duty and country.

I found The Dark Room by Rachel Seiffert, (shortlisted for the Booker prize in 2001) in the Christian Aid book sale last month. Every now and then I do try to upgrade my literary antennae by reading something from the higher literary shelves! Besides which, my son is an authority on some of the themes it covers; I think we should try to understand what it felt like ‘on the other side’; and the blurb appealed.

The book tells the stories of three ordinary Germans, the descendants of Nazis/Nazi sympathisers.
Helmut is ‘a young photographer in Berlin in the 1930s who uses his craft to express his patriotic fervour‘. Hmm. Well, I’ve read another debut manuscript recently which does something similar – still to be published, so I can’t add a link yet. Both raise issues for me. How far would I have risked my life to expose the horrors of persecution and discrimination in those circumstances?
Lore is a 12-year-old girl in 1945 who ‘guides her young siblings across a devastated Germany after her Nazi parents are seized by the Allies‘. Hmmm, that same year my parents were doing their best to cope with the vicissitudes of life in this country, altered forever by the same war. They struggled with the tensions of conflicting ideologies and family security and public censure. Would I have held fast to my principles and risked so much?
Michael is ‘a young teacher obsessed with what his loving grandfather did in the war, struggling to deal with the past of his family and his country’. Hmmm, my uncle died at the age of 20 on the battlefields of the Somme, in WW1, fighting for the other side. I regret the senseless waste of his life, but I see him as collateral damage, ‘doing his duty’ as he perceived it. How differently would I feel if he had ordered millions to the gas chambers, or shot children in cold blood, or even stood by condoning such barbarity? Would that be ‘doing his duty’?

So this book resonated in many ways, and challenged me to think again about guilt, and responsibility, and both personal and national culpability. Are any of us completely blameless? How much are we accountable for what is done on our behalf? After all, as the famous quote has it, The only thing necessary for the triumph of evil is for good men to do nothing’.

There are two passages in The Dark Room that highlight the importance of facing squarely what is done in our name. Both come from Michael, the young teacher who’s obsessed with the discrepancy between the two faces of Askan Boell; one the loving grandfather who amused him with drawings, and dandled him on his knee; the other a Waffen SS officer who countenanced and carried out the deaths of an untold number of innocents. Michael’s struggling with the whitewashing of history he sees in the education of German students:

They are being taught that there are no perpetrators, only victims. They are being taught like it just happened, you know, just out of the blue people came along and did it and then disappeared. Not the same people who lived in the same towns and did the same jobs and had children and grandchildren after the war.

I just think they should read about the people who did it, too. The real, everyday people, you know. Not just Hitler and Eichmann and whoever. All the underlings, I mean. The students should learn about their lives, the ones who really did the killing.

Having allowed himself to go there, Michael finds himself consumed with rage and shame. And appalled at the wanton refusal to accept reality that he encounters in his family. Even his own mother denies the possibility that her father was a brutal killer. She was twelve when he returned after the war. Yes, he was a soldier, he killed other soldiers in battle, she accepts that, but not … not murder. Because she ‘knew him‘ – her loving father.  ‘He was my Papa. Always Askan. Just the way he was … he wasn’t capable …’  How would we feel in their shoes? Would we even want to know?

And even those most intimately involved reconstructed the truth. As one of Michael’s informants, Josef Kolesniki, a collaborator, says: those in authority said killing the Jews was the thing to do. They didn’t order anyone to do the killing, so they absolved themselves of the responsibility: they said the men voluntarily chose to pull the trigger. But the men aiming the guns were doing what they’d been told was right, so they weren’t  responsible either. Is it possible for us too to completely delude ourselves and deny all moral responsibility for what we do? Could we too be sucked into an evil system and lose our own moral compass?

And it’s these big challenges underpinning the tales of three young Germans that lift The Dark Room into a different league. I’d be lying if I said I enjoyed the book, or the writing style. But I did appreciate the bigger messages. It’s only by honestly facing such issues that we can take those vital steps towards learning from the mistakes of the past.

 

 

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The Manchurian Candidate

Well, that’s the Ethics Film Festival over for another year. And I’ve survived! No rotten tomatoes or heckling or booing. Phew!

The format is the same for each session: the film is shown, and then a panel of professionals from different disciplines (bioethics, law, philosophy, politics, sociology) comment on it before engaging the audience in discussion about the issues. I had my moment on the high stool at the front on Sunday afternoon (talking about The Manchurian Candidate). The quality of the challenges that come from the floor always impresses me – sometimes I struggle to even understand the question, never mind answer it.  But maybe the label ‘ethics’ attracts an erudite and informed thinker in the first place.

Anyway this year I actually found it quite stimulating analysing one film in detail and thinking about its messages. When the film The Manchurian CandidateThe Manchurian Candidate was first shown in the early 1960s the world was a different place. It tells the story of an American army sergeant (played by Laurence Harvey) who is decorated for his bravery in the Korean war. But his superior officer Major Marco (Frank Sinatra) suspects there’s something phoney about the account of an ambush and bravery under attack, and sets about uncovering the bizarre truth. It features a power-crazed mother, a puppet presidential candidate, warring senators, hypnotic card games, a couple of delectable girls, and an escalating plot to gain a foothold in the White House.

That early version caught the mood of the time – doubts about America’s involvement in Korea and deep suspicion about communist infiltration. And yet the film is still challenging today fifty years later, making it such a good choice for the Neuroethics Film Festival. How brainwashed are we? How much do we exercise freewill, or is our future pre-determined by our biological brains? How much moral responsibility should we take for our own actions and opinions?

I must confess I was devoutly grateful that I wasn’t allocated the final flim, A Clockwork Orange. Horribly violent and disturbing. But, or course, an effective and powerful stimulant to vigorous debate on the issues of correction and deterrent, punishment and rehabilitation, competition for resources, moral responsibility, religious conviction and political agendas. Which was the whole point.

Appearing at our local library a couple of days later was tame and safe by comparison. I am after all an acknowledged expert on the subject of my own novels … I hope! I know why I wrote what I wrote. And I’m prepared to defend my choices to the death!

So, that’s the end of my professional away-dates for this year. Things start up again after New Year but for now I can settle back into working in the warmth and security of my study. And in between sneak in a little preparation for Christmas. Yes!!

Speaking of Christmas …poinsettiasThis was a small part of the thousands of plants on display during the annual poinsettia walk at the Pentland Garden Centre this week. Fabulous, eh? The prime specimen on our kitchen windowsill at this very moment is lifting my spirits already.

 

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