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Dum Spiro Spero

Seamus O’Mahony

When Breath Becomes Air, by Paul Kalanithi, Bodley Head, 225 pp. £12.99. ISBN 978-1847923677

Paul Kalanithi was nearing the end of his training as a neurosurgeon when, aged thirty-six, he was diagnosed with stage IV lung cancer. He had never smoked. Even by the exalted standards of American academic medicine, Kalanithi was a high-flier. The son of mixed-faith Indian immigrants (his father a Christian doctor, mother a Hindu physiologist), he grew up in a remote part of Arizona. The Kalanithis had moved there from New York, reasoning that it would be cheaper and that they might thus be able to afford to send their three sons to good universities. Paul, the middle boy, was tutored by his fiercely ambitious mother: “She made me read 1984 when I was ten years old; I was scandalized by the sex, but it also instilled in me a deep love of, and care for, language.” He won a place at Stanford, where he planned to study English literature. Just before he started his course, his girlfriend gave him a copy of a novel by Jeremy Leven called Satan: His Psychotherapy and Cure by the Unfortunate Dr. Kassler, J.S.P.S. Although he found the book “neither cultured nor funny”, it made an impression: “ ... it did make the throwaway assumption that the mind was simply the operation of the brain, an idea that struck me with force; it startled my naive understanding of the world.” He decided there and then to study neuroscience as well as English literature.

Kalanithi thrived at Stanford:

I studied literature and philosophy to understand what makes life meaningful, studied neuroscience and worked in a fMRI lab to understand how the brain could give rise to an organism capable of finding meaning in the world, and enriched my relationships with a circle of dear friends ...

Studying under the supervision of the great philosopher Richard Rorty, professor of comparative literature at Stanford, he wrote a thesis on Walt Whitman called “Whitman and the Medicalization of Personality”. Kalanithi began to realise, however, that his future would not be as an English professor: “My thesis ... was well-received, but it was unorthodox, including as much history of psychiatry and neuroscience as literary criticism.” Asking himself the question “Where did biology, morality, literature and philosophy intersect?” Kalanithi’s inner voice commanded: “Set aside the books and practice medicine.” Despite the fact that his father, uncle and elder brother were all doctors, he claims that he had never previously considered a career in medicine. He seems to have suffered from the same delusion as Jonathan Miller, namely that medicine was the perfect occupation for a “polymath”: “ ... hadn’t Whitman himself written that only the physician could truly understand “the Physiological-Spiritual Man”?” Aspiring medical students commonly profess all sorts of grandiose philanthropic motives, but has there ever been an entrant to medical school with such lofty ambitions?

. . . it [the study of medicine] would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the question of what makes life meaningful, even in the face of death and decay.

Kalanithi was duly accepted by a medical school (Yale of course), and with a year to kill before he started, was accepted into the prestigious history and philosophy of science course at Cambridge. The year in England only confirmed his zeal:

I spent the next year in classrooms in the English countryside, where I found myself increasingly often arguing that direct experience of life-and-death questions was essential to generating substantial moral opinions about them ... It was only in practicing medicine that I could pursue a serious biological philosophy. Moral speculation was puny compared to moral action.

Is it at all possible that his reasons for going into medicine were more prosaic? It is hardly surprising that the son of Indian immigrants, with three male relatives in the profession, would take up the trade too. His claim that he entered medicine with the intention of becoming some sort of magus, delving into the mysteries of life and death, is unconvincing. I suspect that he didn’t see a future for himself as a humanities academic, and decided to take up the family business instead. His waxing on “the Physiological-Spiritual Man” and “the sublime” has the flavour of a post-hoc rationalisation of rather more suburban motives.

The first half of this short book describes Kalanithi’s training as a medical student at Yale, and then his neurosurgical residency at Stanford. Dissection of a cadaver is still at the core of anatomy teaching in many medical schools, despite the fact that anatomy can be taught just as effectively with three-dimensional digital images. Like most medical students, Kalanithi found the experience disturbing. He notes that doctors rarely donate their bodies for this purpose, which is hardly surprising, given dissection’s unique combination of futility, horror and indignity: “ ... the thought of your mother, your father, your grandparents being hacked to death by wise-cracking twenty-two-year-old medical students”. The surgeon and writer Sherwin Nuland was at this period still on staff at Yale medical school, and Kalanithi was inspired by his book How We Die (1993):

Descriptions like Nuland’s convinced me that such things could be known only face-to-face. I was pursuing medicine to bear witness to the twinned mysteries of death, its experiential and biological manifestations: at once deeply personal and utterly impersonal.

While most of his classmates opt for “lifestyle” specialities (those with reasonable hours, good pay and manageable stress levels), Kalanithi decides on a career in neurosurgery, dismissing his contemporaries with the withering observation that “Putting lifestyle first is how you find a job – not a calling ... People often ask if it [neurosurgery] is a calling, and my answer is always yes. You can’t see it as a job, because if it’s a job, it’s one of the worst jobs there is.”

His moment of epiphany occurred one night as he listened to a paediatric neurosurgeon talking to the distraught parents of a child with a brain tumour. Neurosurgery seemed to meet all the criteria for Kalanithi’s vaulting ambitions:

While all doctors treat diseases, neurosurgeons work in the crucible of identity ... Because the brain mediates our experience of the world, any neurosurgical problem forces a patient and family, ideally with a doctor as a guide, to answer this question: what makes life meaningful enough to go on living?
I was compelled by neurosurgery, with its unforgiving call to perfection; like the ancient Greek concept arete, I thought, virtue required moral, emotional, mental and physical excellence ... The idea was overwhelming and intoxicating: perhaps I, too, could join the ranks of these polymaths who strode into the densest thicket of emotional, scientific, and spiritual problems and found, or carved, ways out.

Kalanithi’s aspiration to become a “polymath” reminded me of a lecture I attended last year in Edinburgh, given by my friend the physician Kel Palmer, on the subject of polymaths in medicine. Most so-called “polymaths”, he observed, are really dabblers: “True polymaths – acknowledged experts in multiple areas – are inevitably rare beasts.” These true polymaths, he went on to argue convincingly, make bad doctors: “Flitting like a butterfly from one discipline to another – as a polymath does – being impatient and restless are not the attributes of a good doctor where patience, a painstaking approach to problem solving, sticking to the point without being distracted by irrelevancies – and being willing to do this repeatedly, are some of the essential requirements for being a good doctor.” Polymaths, Kel concluded, are too impatient, easily bored, and generally too intelligent to be good doctors.

Kalanithi’s training was brutal: American trainees are “limited” to working eighty-eight hours a week, but commonly work over one hundred hours. (Irish trainee doctors’ hours are set at a maximum of forty-eight hours a week by the European Working Time Directive.) The bravado and macho posturing portrayed in American medical dramas seems to be based on reality: his chief resident boasted: “Neurosurgery residents aren’t just the best surgeons – we’re the best doctors in the hospital.” His chief ordered him to learn to eat with his left hand: “You’ve got to learn to be ambidextrous.” Residency training gave him ample opportunity to witness death in the raw: “Some days, this is how it felt when I was in the hospital: trapped in an endless jungle summer, wet with sweat, the rain of tears of the families of the dying pouring down.” He began to realise that medicine often causes suffering instead of relieving it:

Rushing a patient to the OR to save only enough brain that his heart beats but he can never speak, he eats through a tube, and he is condemned to an existence he would never want ... I came to see this as a more egregious failure than the patient dying.

Kalanithi embarked on his neurosurgical career with grandiose, hyperbolic notions: “I had started in this career, in part, to pursue death: to grasp it, uncloak it, and see it eye-to-eye, unblinking ... getting right there, to the heart of the matter ... surely a kind of transcendence would be found there?” Like all doctors, however, the quotidian frustrations of the job took over, and he found himself more concerned about his ice-cream sandwich melting than the fate of a patient with a severe head injury:

I wondered if, in my brief time as physician, I had made more moral slides than strides ... I feared I was on the way to becoming Tolstoy’s stereotype of a doctor, preoccupied with empty formalism, focused on the rote treatment of disease – and utterly missing the larger human significance.

He learned that “technical excellence was not enough”, and that “when there’s no place for the scalpel, words are the surgeon’s only tool”. He observed how doctors shirked the difficult task of breaking bad news: “Oftentimes, we’d have a spat with the oncologist over whose job it was to break the news.” He quickly learned a few rules for this job: “Detailed statistics are for research halls, not hospital rooms ... it is important to be accurate, but you must always leave some room for hope.”

As a doctor, Kalanithi set himself unattainably high, quasi-sacerdotal, standards:

The cost of my dedication to succeed was high, and the ineluctable failures brought me nearly unbearable guilt. Those burdens are what makes medicine holy and wholly impossible: in taking up another’s cross, one must sometimes get crushed by the weight.

He might have developed a more realistic expectation of life as a doctor, and placed less pressure on himself, had he read Richard Smith’s commencement address to new medical students at York, published in the British Medical Journal in 2003, the year Kalanithi began his medical studies at Yale. Taking inspiration from the great psychoanalyst DW Winnicott’s idea of “the good enough mother”, Smith argued:

The attempt to be the best mother in the world, the best neurosurgeon, or the best medical editor will end in tears. Being a good enough mother is to be a good mother, whereas the attempt to be the best will guarantee that you won’t be (indeed, you may be a highly damaging mother). Similarly, you should aim to be a good enough medical student and doctor.

But good enough was nowhere nearly good enough for Kalanithi. He decided that “the most rigorous and prestigious path is that of the neurosurgeon-neuroscientist”. In the fourth year of his neurosurgical training, he began work in the Stanford neuroscience lab with “V”, professor of neurobiology, and like Kalanithi, a second-generation Indian. He embarked on a project aimed at implanting signals into the brain (“neuromodulation”), using gene therapy. This neuromodulation, he hoped, might ultimately be used to treat a variety of neurological and psychiatric disorders. He formed a close friendship with “V”, whom he admired for his modesty and scientific integrity. Kalanithi quickly came to realise that such modesty and integrity are rare qualities in someone leading a prestigious research lab: “Science, I had come to learn, is as political, competitive, and fierce a career as you can find, full of temptation to find easy paths.” “V” is struck down with pancreatic cancer, but eventually (and rather miraculously), survived and returned to work after surgery, chemotherapy and radiotherapy.

Kalanithi was promoted to chief neurosurgical resident, and the Stanford medical school decided to engineer a faculty position (“for a neurosurgeon-neuroscientist focused on techniques of neural modulation”) just for him. He was brought back to earth by the news that a friend and fellow surgical resident killed himself after a case went badly wrong. He reflects:

We had 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, but you can believe in an asymptote toward which you are ceaselessly striving.

Part II of this book opens with Kalanithi’s cancer diagnosis when his hyper-ambitious universe came crashing down around him: “my carefully planned and hard-won future no longer existed”. His cardiologist father abreacted, even suggesting that Kalanithi’s very practical financial planning to provide for his wife after his death was a capitulation to the disease: “How often had I heard a patient’s family member make similar declarations? I never knew what to say to them then, and I didn’t know what to say to them now.”

He was referred to an oncologist with expertise in lung cancer, “Emma Hayward” (not her real name), who now becomes a central figure in this story. Although she refused to discuss survival figures for stage IV lung cancer, she encouraged Kalanithi to return to work. I shared Kalanithi’s initial reaction: “Go back to work? What is she talking about? Is she delusional?” He concludes that cancer survival statistics are of little help or succour: “It occurred to me that my relationship with statistics changed as soon as I became one ... Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

I was reminded of the late Stephen Jay Gould’s famous essay “The Median is not the Message”. Diagnosed with a rare form of cancer (primary peritoneal mesothelioma), Gould looked up the survival statistics and found the median survival of patients with this cancer was just eight months. He noticed, however, that the survival “bell-curve” was not symmetrical, that it was “right-skewed”, with a small minority of long-term survivors. Gould reasoned that he might just be in this small minority: “I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment.” He was right: he survived for twenty years, dying of an unrelated cancer. Kalanithi muses on the nature of hope, wondering if it left “some room for a statistically improbable but still plausible outcome”.

His wife Lucy (also a doctor – they had met at medical school) was on the brink of leaving him when his cancer was diagnosed: the long hours of residency training had almost fatally damaged their marriage. She insisted that they see a couples therapist specialising in cancer patients (remember, this is California). The therapist told them: “Well, you two are coping with this better than any couple I’ve seen.” They decided to try for a baby. In the book’s epilogue, Lucy writes: “We each joked to close friends that the secret to saving a relationship is for one person to become terminally ill.” After IVF, the couple eventually had a baby girl called Cady.

Kalanithi accepts the grim irony of his situation:

Shouldn’t terminal illness, then, be the perfect gift to that young man who had wanted to understand death? What better way to understand it than to live it? But I’d had no idea how hard it would be, how much terrain I would have to explore, map, settle ... I hadn’t expected the prospect of facing my own mortality to be so disorientating, so dislocating.

The late Kieran Sweeney, a doctor and writer, described how his cancer treatment was focused almost exclusively on the technical aspects: “When one meets senior clinical staff, one is left with a sense of technical competence, undermined with some notable exceptions, by a hesitation to be brave. Eye contact is avoided when one strays off the clinical map on to the metaphysical territory – I am a man devoid of hope – and circumlocution displaces a compassionate exploration of my worst fears.” Kalanithi’s bi-weekly appointments with “Emma Hayward” regularly strayed onto this metaphysical territory. He examined his options: “Tell me three months, I’d spend time with family. Tell me one year, I’d write a book. Give me ten years, I’d get back to treating diseases.” Like many American oncologists, “Emma Hayward” was wildly optimistic with her patient:

Going over the images with me, Emma said, “I don’t know long you’ve got, but I will say this: the patient I saw just before you today has been on Tarceva for seven years without a problem. You’ve still got a ways to go before we’re that comfortable with your cancer. But looking at you, thinking about living ten years is not crazy.”

As it turned out, Kalanithi survived for twenty-two months following his diagnosis, some distance short of ten years. Encouraged by his oncologist’s optimistic prognostications, as well as Beckett’s famous exhortation (“I can’t go on. I’ll go on.”), which he repeated over and over to himself, he decided to return to work as a surgeon: “One part of me exulted at the prospect of ten years. Another part wished she’d said, “Going back to being a neurosurgeon is crazy for you – pick something easier.”” Returning to the OR, he had to lie down during the first case, but “over the next couple of weeks, my strength continued to improve, as did my fluency and technique.” Soon, however, the reality of his situation caught up with him:

But the truth was, it was joyless. The visceral pleasure I’d once found in operating was gone, replaced by an iron focus on overcoming the nausea, the pain, the fatigue. Coming home each night, I would scarf down a handful of pain pills, then crawl in to bed ...

Initially confining himself to operating, he decided to take on the full burden of ward work, clinics and paper-work, only to find himself overwhelmed: “At the end of the first week, I slept for forty hours straight.” Devastated to learn that the bespoke neurosurgeon-neuroscientist job at Stanford had gone, he travelled to Wisconsin for an interview, and amazingly (given the fact that he had terminal cancer) was offered a similar job. Briefly tempted, he declined, realising it is “a fantasy”. He returned to the Christianity of his childhood, finding comfort in its central values – “sacrifice, redemption, forgiveness”. Tellingly, he confesses: “Had I been more religious in my youth, I might have become a pastor, for it was the pastoral role I’d sought.” I wondered if Kalanithi might have been better suited to a more contemplative career in palliative care.

Inevitably, his disease progressed, and he finally decided he could no longer work. “Emma Hayward” managed to put a defiant, Churchillian spin on his disease progression:

“This is not the end”, she said, a line she must have used a thousand times – after all, did I not use similar speeches to my own patients? – to those seeking impossible answers. “Or even the beginning of the end. This is just the end of the beginning.”
And I felt better.

On the day he was due to attend the graduation ceremony from his residency programme, Kalanithi was taken suddenly ill and brought to the emergency room. His condition deteriorated rapidly, and he ended up in ICU (Intensive Care Unit), where various specialists, including nephrologists, endocrinologists, oncologists, ICU doctors and gastroenterologists squabbled over his treatment: Kalanithi refers to this phenomenon as “the WICOS problem” – Who Is the Captain of the Ship? “Emma” – who had been away on holiday – returned, and took over the role of captain. Having pulled Kalanithi through this crisis, she reverted to her relentless, delusional optimism: “‘You have five good years left,’ she said.” Her patient, however, finally saw this wishful, magical thinking for what it was: “She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea.” Kalanithi is remarkably forgiving of this fudging and fibbing, this hesitation to be brave:

There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss. Doctors, it turns out, need hope too.

Other commentators have praised “Emma Hayward” for her role as Kalanithi’s amicus mortis, but she strikes me as the Very Model of the Modern American Oncologist. Part conventional cancer doctor, part shaman, she was able, like Orwell’s O’Brien in Nineteen Eighty-Four, to simultaneously believe two truths. The conventional cancer doctor part of her surely knew that Kalanithi was, at that point in his illness, unlikely to survive five months, let alone five years, yet the shaman part of her half believed the lie she was telling her patient and herself. Her no doubt well-intentioned exaggeration of Kalanithi’s survival prospects led him to take the ill-advised decision to go back to surgery, when his remaining time would have been more fruitfully spent with his family and his books. Unfortunately, the “Emma Hayward” approach is popular with patients: a study published in the New England Journal of Medicine in 2012 found that the less patients with advanced cancer know about their prognosis, the more satisfied they are with their oncologists.

“Emma Hayward”, like many oncologists, seemed to believe that hope must be maintained at all costs, even if it meant creating an atmosphere of histrionic pretence. The medical journals now regularly feature earnest, hand-wringing articles on the nature of hope in terminal illness, and how to “re-frame” it. “Hope” can mean many different things: for example, a person who has suffered the ravages of a painful and debilitating illness might welcome the new of a short survival prognosis with relief. Lisa Rosenbaum, a doctor and friend of Kalanithi’s, argued (also in the New England Journal of Medicine) that doctors have conflated empathy and hope. There is little reward, professionally or emotionally, for doctors who tell patients the truth, but the Lie is heavily incentivised.

Towards the end of the book, Kalanithi observes how time changes for the dying:” With little to distinguish one day from the next, times has begun to feel static ... Now the time of day means nothing, the day of the week scarcely more.” He punctures the absurd contemporary fantasy which is The Bucket List: “ ... an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day.” The book concludes with an address to his baby daughter: “ ... you filled a dying man’s days with a sated joy”.

Kalanithi died without finishing his book; the end of the story is told by his widow, Lucy. She describes his inexorable and inevitable decline, with the cancer spreading to his brain and his bones. He was referred on to a neuro-oncologist, who instructed Lucy “to videotape him daily, doing the same task, to track any deficits in his speech or gait”. (Oncologists are as skilled at handling relatives as they are at coaxing patients along.) The end, typically, was sudden and not quite expected. Kalanithi drifted into respiratory failure, and, sensing that the end was near, decided against intubation and ventilation. The oncologist, however, remained as stubbornly optimistic as ever: “Paul’s oncologist had phoned in, hoping that the acute problem could be ameliorated, but the physicians present were less optimistic.” (This reminds me of the hoary old joke doing the rounds among doctors: “Why do coffin lids have nails? To keep the oncologists out.”)

The foreword is written by the eminent doctor/novelist Abraham Verghese, who is a physician at Stanford medical school. Verghese likens Kalanithi’s prose to that of the English physician Thomas Browne’s Religio Medici (A Doctor’s Religion), a confessional meditation on life, death, and religion. The book, originally written in 1642, and initially circulated only among Browne’s friends, has assumed a sort of mythical status. Sir William Osler, widely regarded as the founding father of modern medicine, read from it every night before going to sleep, and was buried with a copy of the book. Inspired by his hero Osler, Verghese tried and failed to find inspiration in the book. (I admit to a similar struggle.) In the end, however, he cracked it: “The trick, I discovered, was to read it aloud, which made the cadence inescapable.” He finds a similar cadence in When Breath Become Air. Unlike Religio Medici, however, Kalanithi’s book does not demand any special effort on the part of the reader; this short book is beautifully written, and can be read with pleasure in a few hours.

I am in two minds about Kalanithi: irritated by the deluded ambition displayed in the first half of the book, yet admiring of the candour and courage shown in the second half. Had he been my colleague or my trainee, I would have been appalled by his pomposity and hubris, his preposterous and naive belief that a career as a neurosurgeon would somehow allow him to unlock the secrets of life, death and the human soul. In the end, however, the man who emerges from the pages of this book is as frail and vulnerable as the rest of us. It is a very moving story.

1/5/2016

Seamus O’Mahony is a consultant physician and a regular contributor to the Dublin Review of Books. His book The Way We Die Now is published this week by Head of Zeus.

 

 

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