Hazel McHaffie

compassion

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.

 

, , , , , , , , , , , , , , , , , , , , , , ,

Comments

On the shoulders of giants

Some time ago I listened to one of these programmes where people tell their stories of good triumphing over tragedy. In this case it was a woman called Zoe, who told of her experience losing 5 early pregnancies. The consultant, she alleged, had told her not to even start looking for support; there was nothing out there. In response she set up her own helpline: originally called Saying Goodbye, now the Mariposa Trust.

Actually, it’s not true there’s nothing out there. I worked in the field of parental loss for decades, and there are a number of organisations that reach out to grieving families in their need. As a researcher, I myself studied what bereaved parents want and need, and my findings were widely disseminated.

Which all brings me to today’s subject. It’s important not to forget that what we do builds on the shoulders of others; often of giants. And it’s the same in literature. We’ve all benefitted from reading other people’s work – volumes they’ve laboured over, struggled with, paid a heavy price for. Sometimes we aren’t even consciously aware that these writings are impinging on us, altering our way of thinking, touching us at some deep level.

I’ve had a weird sensation of deja vu this week. I’ve been reading One Life by Rebecca Frayn. It tells the story of Rose and Johnny, a young couple who unexpectedly discover a deep desire for parenthood. But unfortunately Johnny is sub-fertile, and Rose is unable to get pregnant even with medical help (IVF, ICSI).

I explored the scenario of infertility in two of my own early novels: Paternity and Double Trouble, so of course I was fascinated to see how Frayn tackled it. I’m not suggesting for one moment that this author has copied my work – her approach is quite different, and I don’t suppose she even knows of my existence! But we are neither of us entering virgin territory, we are both building on what has gone before, maybe our own experiences, certainly those of others who’ve delved into these sensitive areas before us, in factual accounts as well as in the world of make-believe.

And this is where fiction especially comes into its own, because it has a dual effect, touching the heart as well as the intellect. It allows and encourages us to get inside the skin of people like Rose and Johnny, to empathise with their emotions, and hopefully emerge more understanding, more open-minded, more supportive, more compassionate. My raison d’etre. I’m delighted to find another debut novelist entering into my world.

, , , , , , , , , , , , , ,

Comments

Fallibility in medicine

Any day now I expect to get a letter giving me a date on which a person unknown to me will thread a catheter into my heart and fire radio waves at it. There is a 2 in 1,000 chance he will kill me in the process. Not the time you’d think to be contemplating the matter of medical fallibility; but I can honestly say I am perfectly sanguine about this prospect.

Almost all surgical procedures carry risks. As pioneer Rene Leriche wrote rather more poetically in 1951: ‘Every surgeon carries within himself a small cemetery, where from time to time he goes to pray – a place of bitterness and regret, where he must look for an explanation for his failures.’ Note: Every surgeon. I’m also very aware that some specialties are more hazardous than others: hearts and brains are especially vulnerable areas to tinker with. Ahhh, brains! … now there’s a different kettle of fish altogether.

Henry Marsh is a brain surgeon, so eminent a one moreover that he’s been the subject of two major documentaries and was awarded a CBE in 2010 – click on this picture to see him in operationHenry Marsh in operation. But he hasn’t always been so single-minded and determined. His was a fairly circuitous route into medicine and even once he entered the profession he felt pretty jaded about it – bored even … until that is he encountered neurosurgery. Then he fell in love. In the thirty years since, practising his chosen discipline, he’s had countless successes, as well as his fair share of ‘terrible failures‘, all punctuated with periods of ‘deep despair‘. Not surprisingly. His is one of the most high powered, high risk, stressful and dangerous jobs.

If you think you carry a heavy burden of responsibility, if you ever feel guilty about things that have gone wrong on your watch, then I recommend you read his book, Do No Harm, published last year. In his own words:

‘As a neurosurgeon you have to come to terms with ruining people’s lives and with making mistakes. But one still feels terrible about it and how much it will cost … But nobody, nobody other than a neurosurgeon understands what it is like to have to drag yourself up to the ward and see, every day – somebody one has destroyed and face the anxious and angry family at the bedside who have lost all confidence in you … You can’t stay pleased with yourself for long in neurosurgery. There’s always another disaster waiting round the corner.’

Nor does he attempt to hide behind his colleagues or seek safety in numbers; he paints himself as fearfully human and flawed. That takes courage. He shares his bad temper, bad language, bad judgement calls, bad manners, his occasional lack of professional detachment.

Do No HarmBut through all the chagrin and curses shines his awe of the magnificence and significance of the human brain – something ‘infinitely mysterious’. As he slices into the soft white jelly he finds it almost incomprehensible even yet to believe that he is ‘moving through thought itself, through emotion and reason,’ rummaging amongst memories and dreams and reflections, all that is important in human life. But he is always, always aware that one false move, one moment of inattention, can take away for ever sight, or memory, the ability to recognise family, or the power to move … even life itself. And that sense of wonder and fear has never left him. Because of it, even today, moving towards retirement, he still gets stage fright, still feels intense anxiety, still builds in little superstitious rituals. He is brutally conscious of his own fallibility.

However, because he is now so experienced, he can afford to share stories from the past where he got things wrong. Would that all doctors could admit their failures and misjudgements and learn from their mistakes to the greater good of all. So often all patients/relatives are looking for is an apology. Mr Marsh is not afraid to offer one. I liked him the more for his humility.

Reading his account of life at the sharp end, though, I also experienced a lowness of spirit. As a patient, as a relative, as a health care professional, I’ve been frustrated and upset by inefficiency and disorganisation and absurd bureaucracy and bad practice within the NHS, and as an insignificant player in this vast organisation, felt horribly powerless. But I retained a vague sense that those higher up the food chain could bypass the nonsense and get results. Henry Marsh is at the top of the clinical hierarchy, but he too has been rendered impotent in the face of managerial and political directives. I so much identified with his feelings of resentment and anger when even he couldn’t get tests done, or results made available, or colleagues to cooperate; when he couldn’t prevent serious operations being cancelled at the eleventh hour.

I also felt his very human pain when conditions were inoperable, when patients developed catastrophic complications, when they died. And I silently applauded. Wouldn’t we all want to be looked after by a surgeon with compassion, a man who really cares? He learned this valuable lesson during his student years: ‘It was their (surgeons’) kindness to patients, as much as their technical skill, which I found inspiring.’ Indeed. Me too. I’ll be looking for that when I am finally admitted for that procedure on my heart.

A legitimate question to ask of one’s surgeon is: What would you do if it were your mother/your child? And this question resonates with Marsh particularly because many years ago he was the parent of a baby son with a brain tumour; he felt the frailty and powerlessness of any parent anywhere in such circumstances. The feeling was resurrected to a degree when he became a patient himself needing operations on both eyes, when he broke his leg, when his mother was dying of cancer, when his father developed dementia. It’s salutary being on the other side and, he believes, an important part of any doctor’s education. I could identify with this too; my recent experiences on the receiving end have highlighted the essential imbalance between the clothed and unclothed; the upright and the supine; the caregiver and the customer.

Do No Harm is alive with vibrant stories, details of many patients with many different conditions and diagnoses, treated with various degrees of success. I could personally never cope with the burden of mutilation, death and disaster that litters Marsh’s path; I have neither the psychological strength nor the ability to forgive myself. I’d have sunk without trace very early on. But I’m sincerely awed by the courage of clinicians like him who bear that burden for us all.

, , , , , ,

Comments

In sickness and in health

In all the pomp and pageantry, emotion and style of Friday’s royal wedding, one of the most telling moments for me was when the Bishop of London, the Rt Rev Richard Chartres, read out the prayer composed by the young Prince William and his bride, Catherine Middleton.

Having given thanks to God for their shared love and happiness, they asked for help
– to keep their ‘eyes fixed on what is real and important in life
– ‘to serve and comfort those who suffer
and
-to ‘be generous’ with their ‘time and love and energy’.

Wow! If they stick to the intention, what a force for good they could be. After too many years of sorry royal shenanigans, this country could do with a fresh start based on sound godly principles and genuine human compassion.

Interestingly, long before the wedding date was announced, I was booked to attend a weekend focusing on just how Christians could reach out to embrace and support others, valuing and working with diversity. It necessitated travelling on Friday 29 April. Honour dictated I respected the prior booking, of course; I went to Manchester not London! And there we were picking up exactly the issues encapsulated in that prayer: love in action.

But since we’re talking of spiritual and practical matters, how about a little parable to illustrate where my mind was going as I watched the wedding highlights in my hotel room on Friday night.

Drag your mind away from spring blossom, blue skies and warm sunshine, and back to the big freeze of January. Ruined railingsBlack ice coats the road. A car skids completely out of control, demolishing an ancient boundary wall and ornate railings. A flowering almond tree escapes with a scored trunk, but a beautiful dissected-leaf red maple (OK, acer to you horticultural experts) is broken off completely, leaving only a bare stump.

The site is left untouched while insurers and loss adjusters crank their wheels ever so slowly. Time passes. Nature rests. But with the coming of spring the temperatures creep higher, sap rises in the trees, and lo and behold, that sorry neglected stump is discovered to have sprouted vigorous new growth just inches from the rubble! What a triumph of hope over expectation.

I wonder, did Her Majesty feel a similar sense of renewed hope as she listened and watched in the Abbey on Friday? Certainly a fair old swathe of her subjects did, if news reports are anything to go by. I hope – and yes, pray – their confidence is justified.

I’ll keep you posted on the tree. Will it one day once again vie with its near neighbours for vigour and beauty, I wonder?Young maple treeEstablished maple tree

, , , , , , , ,

Comments