Seamus O\u2019Mahony<\/p>\n
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When Breath Becomes Air <\/em>by Paul Kalanithi. London: The Bodely Head, 2016.<\/p>\n Paul Kalanithi was nearing the end of his neurosurgical training at Stanford when aged thirty-six, he was diagnosed with stage IV lung cancer. He had never smoked. He was referred to an oncologist specializing in lung cancer. \u201cEmma Hayward\u201d \u2013 not her real name \u2013 is a central figure in his posthumously-published memoir When Breath Become Air. <\/em>At their first consultation, Emma refused to discuss survival statistics for stage IV lung cancer, but encouraged Kalanithi to return to work as a surgeon. I shared Kalanithi\u2019s initial reaction: \u201cGo back to work? What is she talking about? Is she delusional?\u201d <\/em>He argues that for the patient, cancer survival statistics are of little help or succour: \u201cIt 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.\u201d<\/p>\n But statistics and probability were <\/em>important for Kalanithi. Examining his options, he reasoned: \u201cTell me three months, I\u2019d spend time with family. Tell me one year, I\u2019d write a book. Give me ten years, I\u2019d get back to treating diseases.\u201d After an initial encouraging response to chemotherapy, his oncologist is wildly optimistic:<\/p>\n Going over the images with me, Emma said, \u201cI don\u2019t know how long you\u2019ve 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\u2019ve still got a ways to go before we\u2019re that comfortable with your cancer. But looking at you, thinking about ten years is not crazy.\u201d<\/p>\n As it turned out, Kalanithi survived for twenty-two months following his diagnosis, some distance short of ten years. Encouraged by his oncologist\u2019s optimism, as well as Samuel Beckett\u2019s famous exhortation (\u201cI can\u2019t go on. I\u2019ll go on\u201d), he returned to work as a surgeon: \u201cOne part of me exulted at the prospect of ten years. Another part wished she\u2019d said, \u201cGoing back to being a neurosurgeon is crazy for you \u2013 pick something easier.\u201d\u201d Returning to the operating theatre, he had to lie down during his first case, but \u201cover the next couple of weeks, my strength continued to improve, as did my fluency and technique.\u201d Soon, however, the stark reality of his disease caught up with him:<\/p>\n But the truth was, it was joyless. The visceral pleasure I\u2019d 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 into bed . . .<\/p>\n Inevitably, as his disease progressed, he knew he could no longer work as a surgeon. When a CT scan showed that his disease was advancing again, \u201cEmma Hayward\u201d managed to put a defiant, Churchillian spin on the situation:<\/p>\n \u201cThis is not the end,\u201d she said, a line she must have used a thousand times \u2013 after all, did I not use similar speeches to my own patients? \u2013 to those seeking impossible answers. \u201cOr even the beginning of the end. This is just the end of the beginning.\u201d<\/p>\n And I felt better.<\/p>\n On the day he was due to attend the graduation ceremony from his residency program, Kalanithi was taken suddenly ill, and ended up in the Intensive Care Unit, where various specialists, including nephrologists, endocrinologists, intensivists and gastroenterologists squabbled over his treatment. Kalanithi refers to this as \u201cthe WICOS problem\u201d \u2013 Who Is the Captain Of the Ship? Emma \u2013 who had been away on holiday \u2013 returned, and took over the role of captain. Having pulled her patient through this crisis, she reverted to her relentless optimism: \u201c\u201d You have five good years left,\u201d she said.\u201d Kalanithi, however, saw this wishful, magical thinking for what it was: \u201cShe pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea.\u201d He is remarkably forgiving of this fudging and fibbing, this hesitation to be brave:<\/p>\n 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.<\/p>\n \u201cEmma Hayward\u201d, like many American oncologists, is part conventional cancer doctor, part shaman. She seems to have been able 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\u2019s survival prospects led him to take the ill-advised decision to go back to work as a surgeon, when his remaining time might have been more fruitfully spent with his family and his books.<\/p>\n Kalanithi muses on the nature of hope in terminal illness:<\/p>\n When I talked about hope, then, did I really mean \u201cLeave some room for un-founded desire?\u201d No. . . So did I mean \u201cLeave some room for a statistically improbable but still plausible outcome \u2013 a survival just above the measured 95 percent confidence interval.\u201d Is that what hope was? Could we divide the curve into existential sections, from \u201cdefeated\u201d to \u201cpessimistic\u201d to \u201crealistic\u201d to \u201chopeful\u201d to \u201cdelusional\u201d? Weren\u2019t the numbers just the numbers? Had we all just given in to the \u201chope\u201d that every patient was above average?<\/p>\n Atul Gawande wrote how the entire edifice of American cancer treatment is based on the assumption that all patients with advanced cancer are in the small, statistically favoured end of the bell-curve, the medical equivalent, he observed, \u201cof handing out lottery tickets.\u201d Cancer patients are routinely treated on this assumption (or hope), but are not prepared for an outcome \u2013 death \u2212\u00a0 which is overwhelmingly more likely. Optimists would cite the example of the palaeontologist and writer Stephen Jay Gould, and his famous essay, The Median is not the Message. <\/em>Diagnosed with a rare form of cancer (primary peritoneal mesothelioma), Gould looked up the survival statistics, and found the median survival 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: \u201cI 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\u2019s best medical treatment.\u201d He was right: he survived for twenty years, dying of an unrelated cancer. I would imagine that this essay is holy scripture for American oncologists.<\/p>\n I am, I confess, an oncology apostate. Cancer treatment seems to offer some patients a toxic combination of false hopes and a bad death. And the oncology community itself acknowledges this. The Lancet <\/em>Oncology Commission produced a\u00a0 lengthy report in 2011 called Delivering Affordable Cancer Care in Developed Countries <\/em>: \u201cThe medical profession and the health-care industry have created unrealistic expectations of arrest of disease and death. This set of expectations allows inappropriate application of relatively ineffective therapies . . . cancer treatment is becoming a culture of excess.\u201d<\/p>\n Can we give our patients hope, yet still be honest with them? \u201cHope\u201d has acquired a very narrow meaning in the cancer setting, namely, an expectation of long-term survival. But for our patients, hope can mean all sorts of things: a reassurance that they will not suffer unbearably, an opportunity to settle affairs and spend time with family, a sure knowledge that their doctor will accompany them on the road as an amicus mortis. <\/em>Giving hope does not mean creating an atmosphere of histrionic pretence, an atmosphere which inevitably explodes as the end nears. Hope and honesty are not incompatible.<\/p>\n![\"image1\"](\"https:\/\/blogs.bmj.com\/medical-humanities\/files\/2016\/05\/image1-189x300.jpg\")
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