Practicing on Patients
By Roxana BadinJuly 8, 2011
The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee
SIDDHARTHA MUKHERJEE BEGINS HIS Pulitzer Prize-winning book on cancer with a quote by Susan Sontag, who died of myelogenous leukemia in 2004:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
Sontag's passage stands like an oak on the blank field of the page, casting the 600 pages that follow in its shadow. How does one write a book about a disease that is unequalled in its power to kill us? How does one do justice to the will that strives to survive it?
By telling a story. "I started off by imagining my project as a 'history' of cancer," Mukherjee explains.
But, it felt, inescapably, as if I were writing not about something but about someone. My subject daily morphed into something that resembled an individual — an enigmatic, if somewhat deranged, image in a mirror. This was not so much a medical history of an illness, but something more personal, more visceral: its biography.
What is most compelling about a cancer biography is its dramatic tension — the conflict between the human will to live and cancer's instinct for expansion. Many, including Mukherjee, characterize this epic struggle as a war, but military metaphors fail to capture the complexity of cancer as an opponent. Friedrich Nietzsche, one of the most prolific citizens of the empire of malady, wrote in Beyond Good and Evil: "Even the body within which individuals treat each other as equals ... will have to be an incarnate will to power, it will strive to grow, spread, seize, become predominant — not from any morality or immorality but because ... life simply is will to power." Anyone who has witnessed cancer's insatiable growth first hand knows this. Cancer is will to power. The disease does not love itself or hate us. It does not fight for God and country. It merely strives to outlive us.
A biography of cancer per se is impossible. Cancer's history comprises the biographies of every person who ever had it or ever will. It is a confluence of individual afflictions and existential bargains made in the dark, tangled night of the hospital ward. It is indiscreet. Until we can prevent or cure it, we are all in vulnerable association with it. Cancer is the result of the uncontrolled growth of a single cell, caused by changes in DNA that affect the genes that trigger cell proliferation. The genes that are thus upended are not foreign to us. We all have them. Everyone holds dual citizenship. Therein lies the tragedy, embedded in our very genes. Aristotle was right. Tragedy instills fear and pity because we can all too easily imagine ourselves in the drama. Cancer is a grotesque simulacrum of the cells inside the healthiest of us. We all live with the monstrous prospect that cancer is waiting to tag us.
Mukherjee wrote his book in an urgent search for answers. As an oncologist, he was asked daily to make critical assessments that led to life and death choices for patients in his care, and his patients' questions pushed him to seek an ever-broader view of the curving landscape. This meant drawing from philosophy and history as well as current science, and so he regularly refers to the distant past. Witnessing the rage of a patient with stage three breast cancer, he is reminded of Atossa, a two thousand year old Persian queen who also suffering from breast cancer, he tells us, "in a fit of nihilistic and prescient fury had a slave cut it off with a knife." Imhotep, the earliest doctor, was a storyteller, and Mukherjee follows his example. Both the clinician and the storyteller need to exhume the past.
In The Emperor of All Maladies, Mukherjee has fashioned a suspenseful page-turner from dry scientific research. He imparts information with a deft hand. Every medical discovery is a three-act drama. Each clinical trial is a potboiler. In the midst of it all is the patient, an uncomfortably passive protagonist, who almost disappears from the story, fading deep into the background. No doubt it is true, as Christopher Hitchens has observed, that no matter how fitting the image of struggle, undergoing cancer treatment feels less like being a soldier than like "dissolving in powerlessness like a sugar lump in water" (Vanity Fair, September 2010). The biography of cancer may by necessity include all who have had it, but pathos in The Emperor of All Maladies has less to do with the life and death of patients than the zeal of the doctors charging ahead only to stumble repeatedly against their own ignorance.
Alongside cancer's history, Mukherjee recounts his own coming of age as an oncologist. Mukherjee acknowledges the queasy-making fact that every doctor's 'practice,' his or her prescribed treatment for a patient, is nothing more or less than a series of trials and errors. His narrative is a looking-glass in which we may view ourselves in all our warty humanity, suggesting that to judge the hubris of the physicians and scientists who came before us with the smugness of hindsight is itself hubristic. Walk a mile in the shoes of a scientist like Max Delbruck, who dismissed DNA as "a stupid molecule" before Oswald Avery and others discovered its central function as a conveyor of genetic information. Mistakes in medicine are inevitable. If and when cancer is ever cured (and Mukherjee wavers on whether this is possible), the author predicts it's likely that the battle will have brought out the worst in doctors once again.
Modern medicine's predilection for overreaching in the fight for cure reflects cancer's own refusal to recognize boundaries. One of the many strengths of the The Emperor of All Maladies is that even during the most intricate explication of how cancer is stitched into our genome, it never loses sight of the big picture: how riddled with irony our relationship to the disease is, how deep the psycho-sociological forces at play in us are. In the 1970s, with renewed public awareness of cancer, we projected onto the disease our deepest anxiety that death would come, not from the hydrogen bomb or the Russians as we had anticipated in the 50s, but from something sinister within us. The Exorcist now haunted us where once we peered over popcorn at It Came From Outer Space. In a way, we were right. We puffed, snorted and chewed tobacco for decades before we finally admitted to ourselves that it was killing us en masse. It is human nature, as W.H. Auden reminds us, to rather be "ruined than changed. We would rather die in our dread than climb the cross of the moment and let our illusions die."
This was no less true of the doctors treating the cancer. Patients suffered at the hands of doctors in the grip of feverish dedication to cure. Not only were there doctors who would rather have died than change what had "fossilized into dogma," many didn't think twice about including their patients in the bargain. In the early 1900s, William Halsted, a surgeon secretly nursing a cocaine habit from years of anesthesia experiments with the drug, performed what Mukherjee describes as "mammoth" mastectomies on women with breast cancer despite mounting evidence of a deep conceptual error. "Halsted and his disciples would rather evacuate the entire contents of the body," Mukherjee writes, "than be faced with cancer recurrences." Convinced that cancer spread centrifugally in large, organized spirals, Halsted applied the same radical surgery to women with metastic breast cancer and women with small, confined lumps. In either case, the disfiguring surgeries were totally unnecessary. Halsted's followers in the United States continued to perform radical surgeries into the 1950s, deriding the scaled-back 'lumpectomy' devised in Great Britain by Geoffrey Keynes. Eventually, a colleague of Keynes's took a chance sabbatical to the Cleveland Institute in Ohio, where a young American surgeon, George Barney Crile, happened to be sitting in on a lecture on breast cancer and minimal surgery. Later, when Crile informed patients themselves of the implications of Halsted's radical surgeries, the patients chose the lumpectomies instead. Any objective tests that Crile tried to establish to make the same point failed, but patients taking matters into their own hands in the climate of 1970s political feminism finally ended this era of malfeasance.
Historically, cancer had most often spread beyond control before doctors were asked to treat it. The doctors responded with quick and immediate measures, but without any mechanistic understanding of the cancer cells they were targeting. Within this double bind was yet another double bind. Treatments like radiation or chemotherapy had to be given in the greatest, most toxic doses possible without, as Mukherjee says,"annihilating the patient." Even if patients were put into remission, a feat in and of itself, many of them relapsed with a second cancer — typically an aggressive, drug-resistant leukemia — caused by the prior chemotherapy: "As with radiation, cytotoxic chemotherapy would thus turn out to be a double-edged sword: cancer-curing on one hand and cancer-causing on the other." The Hippocratic oath is no longer sworn by students graduating from medical school, but its ancient imperative remains an implied promise. The Emperor of All Maladies begs the nagging question: how exactly did doctors make the critical choice to treat patients with protocols that often caused and even expedited their deaths?
A quote from David C. Alsop of the NIH is both illuminating and disheartening: "Saving the individual patient is not the essential mission. Enormous efforts are made to do so, or at least to prolong the patient's life to the last possible moment. But the basic purpose is not to save that particular patient's life but to be the means of saving the lives of others." Not exactly what a cancer patient sees on his consent form. Mukerjee, too, comes close to an answer when he describes witnessing death in the eyes of his patients: "I had not made the journey myself, and I had only seen the darkness reflected in the eyes of others. But surely, it was the most sublime moment of my clinical life to have watched that voyage in reverse, to encounter men and women returning from the strange country — to see them so very close, clambering back." The personal revelation goes some way toward identifying doctors' fears and desires as they watch patients fight to live.
Of the two, fear may be stronger than desire. That doctors responded to cancer with such pernicious enthusiasm belies a deep mortal dread. For each — the patient and the doctor — cancer promises death. One, the patient's, is a death of the body; the other, for the doctor, a death of the ego. Central to the awful push and pull of this three-legged race of life and death is the will to power, the desire in all living thing to affirm their instincts ("and nothing besides!" said Nietzsche). Confronted with cancer's relentless will, doctors sought to affirm their instincts and conquer what was threatening their vocational purpose.
Sidney Farber's crusade to cure acute lymphoblastic leukemia (ALL) is an excellent illustration of this point. Farber, a hero of Mukherjee's, was pivotal to modern cancer treatment and public cancer awareness, and his story is central to The Emperor of All Maladies. Mukherjee, who trained at the Dana-Farber Cancer Institute in Boston where an oil painting of Farber and his scowling smile hangs prominently at the entrance, describes Farber as an idealist, an immigrant's hungry son coming of age in the boom of American post war medicine. Originally a pathologist who longed to practice with real, living children, Farber hadn't experienced the dulling of morale that came with pediatric oncology. Farber's compulsive need to study the past, particularly his experience with the national polio campaign under Franklin D. Roosevelt, had much to do with the breadth of his ambition. As a resident, Farber would make his rounds witnessing children suspended inside iron lungs, and if on one level his experience was a lesson in pragmatism — how best to tackle a full scale epidemic through public awareness — on a deeper level something else might have felt suspended for Farber: science in all its power was stopped dead by the disease and so were the doctors, the effectiveness of whose vocations and self-worth depended on its progress. Whereas many doctors gave up trying to find a cure, fire burned in Farber's belly.
By the time Farber turned his attention to ALL, the most common form of leukemia in children, it had already confounded pediatricians for nearly a century. Patients were "brought to the hospital in a flurry of excitement, discussed on medical rounds with professorial grandiosity," and then sent home to die. In 1947, when Farber injected Robert Sandler, the child to whom Mukherjee dedicates his book, with aminopterin — an antifolate used to stop white blood cell proliferation — and witnessed for the first time in medical history a temporary remission, Farber wasn't just resuscitating the boy; medical science itself was being raised from its coma. Robert's spleen and liver, so swollen that his abdomen was visibly distended, shrunk and his appetite was ravenous. Farber responded by immediately arranging for other ill children at the clinic to be injected with the drug. If antifolates could cure leukemia, he concluded, there were chemicals like antifolates that could cure all of cancer. The key was to keep moving.
The ensuing chemotherapy movement mobilized by Farber and medical philanthropist, Mary Lasker, and fueled by public funding and the public relations campaign called, "Jimmy's Fund," took on, as Mukherjee describes, the characteristics of a "religious cult." Farber and his War on Cancer sparked a fervent faith in a single answer to cancer's riddle. The only question left was "which cure?," and everyone seemed to have a different answer. By the 1980s, oncologists were "pumped up with self-confidence, bristling with conceit, and hypnotized by the potency of medicine." The doctors' bloated egos seemed in step with the zeitgeist. Popular culture and the business sector were caught up in a Gordon Gekko-like pseudo-philosophy of risk, and according to Mukherjee, "Doctors pushed their patients — and their discipline — to the brink of disaster." Though all shared the same goal, it seemed nothing short of a love-in at gunpoint could make surgeons, radiotherapists and oncologists pay attention to what each was finding.
A perfect example of the broken-down state of affairs is Mukherjee's account of the cancer conference that took place in Houston, where Howard Temin, the virologist, presented findings that suggested a possible mechanistic explanation for cancer. While the research scientists were coming to an early, groundbreaking discovery about the nature of cancer in one room, the clinical oncologists were in another room, and never the twain met. "It was as if a sealed divider had been constructed through the middle of the world of cancer, with 'care' on the one side and 'cure' on the other." Just six months before Temen published his findings in Nature magazine, the Laskerites launched their massive public campaign, publishing a full-page advertisement in the Washington Post with a plea to Richard Nixon to help wage the War on Cancer. By 1971, political power pushed the National Cancer Bill into law and $1.5 billion in research was authorized over a three year period, but Temin, Harold Varmus, Michael Bishop and other micro-biologists had already begun discoveries into cell genetics that represented the most significant breakthrough in understanding cancer.
Amid the political struggle and the blitzkrieg of experimentation, what exactly was happening inside the patients? "The story of cancer," Murkajhee writes, "isn't the story of doctors who struggle and survive, moving from one institution to another. It is the story of patients who struggle and survive, moving from one embankment of illness to another." Distinguishing the motivations and desires of the patients from those of the doctors is about as easy as trying to unravel an old jumble of nautical rope.
What is the role, exactly, of the patient's will? Should we just assume that, in the face of death, we all willingly surrender our capacity to question and put ourselves on the rack in a fervent gesture of faith in science and its agent, our doctors? When we are sick, our deepest wish is that doctors will cure us. After all, who else will? Cancer brings us to our knees and we implore our doctors to go to the most extreme measures to fight it. Illnesses can render the most independent thinkers unable to assess critically their own medical care. Today, with treatments that are developed to take into account the wide variation among kinds of cancers and the cell structure of the treatments' targets, arguments for submitting to protracted poison can be extremely compelling, based as they are on precedent and statistical evaluations of the likelihood of success. Historically, however, doctors often made decisions on behalf of patients with no precedents to aide them. Farber's decision to treat Robert Sandler and other children with antifolates on that Boston ward in 1947 wasn't based on their consent, the Nuremberg code for human experimentation that required a patient's explicit voluntary consent having only been drafted a month before the trial. Any full story of cancer requires charting the geography between the diagnostic heights of the institution where the doctors reside and the patients' private embankments — territory that is often misunderstood.
In his 1997 memoir The Diving Bell and the Butterfly, the French journalist Jean-Dominique Bauby gave us a series of "bedridden travel notes," reflecting on his stroke and the imprisoning diving bell of his completely paralyzed body (he dictated the book using only his blinking left eyelid). Like Bauby's locked-in syndrome, all serious illness imposes on us an enforced retreat into the deep interior. Medicine has sought to understand that space, often indecipherable, for thousands of years. Before modern medicine, the primary source of evidence was in the interaction between the doctor and the patient, but the subjective experience of illness often resisted description. "Let a sufferer try to describe a pain in his head to a doctor and language at once runs dry," Virginia Woolf wrote in "On Being Ill." Bauby himself comes up against the stark limits of language: "There are no words to express it. My condition is monstrous, iniquitious, revolting, horrible." Pressed even further by the limited time the average doctor has to focus on any one patient, words are as thin as paper gowns, no matter how stark the examining room light. In a clinical setting, the patient's subjective experience is of secondary importance, at best, where more objective renderings of the illness, such as a scan of the patient's insides, are primary. These scans are indecipherable to laymen and often difficult even for doctors to interpret, requiring that the radiologist add his findings and another layer of interpretation to whatever is occurring in what Bauby calls "the silent world of the entrails."
In the cytotoxic raging against the dying light, a patient's will can and often has been dismissed altogether. No matter what one endures, however, the imperative to affirm one's power persists, even in those encased in the sickest and most ghostly bodies. "I need to feel strongly, to love and admire, just as desperately as I need to breathe," Bauby wrote. Chemotherapy and radiation strip away all vitality, but one's will pulsates like a faraway star. There is a remote urgency patients often feel to say something to their doctors on rounds even if there's nothing new to report. Internet message boards are filled with patients' posts, questions and expressions of struggle and doubt. Philosophers, painters and poets suffering grave illness have effected their self-transcendence through their imagination and work. But when we are ill, our ability to express ourselves often fails us, precisely when we need it the most.
Is there anything doctors should do to help patients engage their will? Mukherjee recounts his own experience with what he calls "repossessing the patient's imagination from death." He begins with a quote by William Carlos Williams — "If a man die, it is because death / has first possessed his imagination" — and proceeds to describe a senior doctor's masterly use of "resuscitating" language. A sixty-six year old woman recovering from surgery to remove a large cancerous mass from her lung looked "nearly catatonic with fear" in the waiting room before the doctor imparted, gradually, critical information about the terminal nature of her illness "with a touch so slight that you might not even feel it." The protocol involved the placing of emphasis on process not outcome, and, apparently, a careful choice of prepositions. When the doctor broached the subject of a high chance of recurrence — up to 60% — he chose the following words to soothe the woman: "Well, there are ways that we will tend to it when that happens."
This choice of words satisfied Mukherjee very much, particularly the use of the stalwart "when" instead of the mercurial "if." Indeed, Mukherjee waxes lyrical about the doctor's technique: "In his hands, information was something live and molten, ready to freeze into a hard shape at any moment, something crystalline yet negotiable; he nudged and shaped it like glass in the hands of a glassblower." Nowhere in Mukherjee's account of this event is there any mention of what the patient actually said in that deep pit of despondency from which she was being extracted with Imagination Recapture. With nothing more from her, it's hard to believe that, on hearing the word "when" instead of "if," any patient's imagination would be wrested from despair. In the terrible ocean of 'when,' more likely, 'if' is the free-floating life raft to which she clings, a tiny vessel inflating or shrinking with her odds of survival and her own exuberance of spirit, and only disappearing completely, if at all, after a long, hard process of brave soul-searching, discussion and reflection, the project of reconciliation with the end — perhaps the hardest feat of our existence.
A doctor's own anxiety about death creates a paradoxical relationship with the patient. At the dreaded moment when there is nothing else science can do to stave off death, it seems there is a natural tendency for doctors to come together and meet patients at the embankment. Mukherjee describes a case in 1961 when the grim experimental trial called VAMP — a high dose, life-threatening therapy that combined four poisonous drugs at once to treat children with leukemia - appeared to be failing, doctors resorted to their "oldest principles" — comforting their patients in moments of stillness. Today, though, doctors have many more possible treatments at their disposal. "Rarely is there nothing more that doctors can do," Atul Gawande has observed. "They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can't eat: there's always something" (New Yorker, August 2, 2010). But, it has been shown that when doctors acknowledge the limits of any further treatment and have substantive discussions with their patients about end-of-life preferences, actively listening instead of talking, it is statistically the case that patients are likely to feel more in control of their situations and suffer less.
Objectivity is the mantra of institutional medicine. It is the standard by which progress and success are assessed, even when it is impossible to demonstrate, by way of totally objective criteria, the effectiveness of one course of treatment over another. But objectivity may be as elusive as cancer's cure. The Emperor of All Maladies reveals medical science to be fueled by subjective, personal convictions, by hubris that closed doctors to the currents of change, and by a fundamental lack of understanding. "Trying to combat cancer without understanding the cancer cell," as one doctor puts it, "was like launching rockets without understanding the internal combustion engine." The clean objectivity a patient banks on when agreeing to clinical treatment is a myth. As Nietzsche wrote in a letter to his sister: "Every true faith is infallible inasmuch as it accomplishes what the person who has the faith hopes to find in it; but faith does not offer the least support for a proof of objective truth." The supremacy of the clinic has arrived at the cost of the most important component to healing: the ability of doctors to see the patient and intuit, as Galen did thousands of years ago, what an endless series of trials and tests can often miss. It was when Geoffrey Keynes was able to see his patient fully and realized that she was too frail to endure radical breast surgery that he knew he needed a better remedy.
Like finding just one cure, getting at just one objective story of cancer may undermine our attempts to understand the real effects of cancer treatment. Subjectivity implies all sorts of complications and issues of reliability, but in the end the patient's story is the most valuable evidence we have of the patient's well being. This may not cure cancer. It will certainly make doctors feel helpless and mortal. But it will release the patient from his powerlessness, enabling him to heal even when he cannot be cured. "Does the cosmos contain keys for opening up my diving bell?" Bauby writes. "A subway line with no terminus? A currency strong enough to buy my freedom back?" Doctors may never be able to answer this question, but they need to understand its power. Mukherjee's book is a testament to how complex and all-encompassing our relationship with cancer is, but it will take many more books written and many more stories told before justice is done.
Photograph © Yuval Hen
Roxana Badin is a contributing editor to the Los Angeles Review of Books. She practiced law in New York and London, and was executive counsel at Disney. She is currently writing a collection of short stories.
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