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Authors: Sherwin B Nuland

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BOOK: How We Die
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During my second year of surgical residency, when Rose was in her early seventies, she experienced a gradual onset of generalized itching all over her body, and after a while an enlarged lymph gland appeared in her armpit. Biopsy revealed an aggressive lymphoma. She was treated by a kind and understanding hematologist who achieved an excellent remission using one of the early chemotherapy agents, chlorambucil. When after a few months the disease recurred and Rose began to weaken, Harvey and I, with the agreement of our cousin Arline, colluded to convince the hematologist that she must not be told her diagnosis.
Without perhaps even realizing it, we had committed one of the worst of the errors that can be made during terminal illness—all of us, Rose included, had decided incorrectly and in opposition to every principle of our lives together that it was more important to protect one another from the open admission of a painful truth than it was to achieve a final sharing that might have snatched an enduring comfort and even some dignity from the anguishing fact of death. We denied ourselves what should have been ours.
Although there was no doubt that Rose knew she was dying of cancer, we never spoke of it to her, nor did she bring it up. She worried about us and we worried about her, each side certain it would be too much for the other to bear. We knew the outlook and so did she; we convinced ourselves she didn’t know, though we sensed that she did, as she must have convinced herself we didn’t know, though she must have known we did. So it was like the old scenario that so often throws a shadow over the last days of people with cancer: we knew—she knew—we knew she knew—she knew we knew—and none of us would talk about it when we were all together. We kept up the charade to the end. Aunt Rose was deprived and so were we of the coming together that should have been, when we might finally tell her what her life had given us. In this sense, my Aunt Rose died alone.
This terrible solitude is the subject of Tolstoy’s story ‘The Death of Ivan Ilyitch.” To clinical physicians especially, the story is terrifying in its uncanny accuracy and in the lessons it teaches. Tolstoy wrote as though possessed of an inborn knowledge greater than any he could possibly have acquired in life. How else could he have intuited the terrible solitude of a death made lonely by withholding the truth, “this solitude through which he [Ivan Ilyitch] was passing, as he lay with his face turned to the back of the divan,—a solitude amid a populous city, and amid his numerous circle of friends and family,—a solitude deeper than which could not be found anywhere, either in the depths of the sea, or in the earth . . .”? Ivan could share his terrible knowledge with no one, “and he had to live thus on the edge of destruction—alone, without anyone to understand and pity him.”
Ivan was not surrounded by people who loved him, and in part perhaps this was why he resorted to wishing, at least a little, to be the object of pity, a graceless state to which few of us would willingly fall at the end of life. The origin of his wife’s attempted deception seems to have been her own determination not to deal with the emotional consequences that the truth would precipitate. Whether such deceptions arise from scorn or from misguided affection, they always leave their victim to deal with his leave-taking alone. In her case, a patronizing contempt was the basis on which she convinced herself that her husband’s death would be easier for both of them if it went undiscussed. It was herself she was thinking about, and not her husband, whose mortal illness was an inconvenience to her, and even an imposition on her household. In this atmosphere, Ivan could not find the strength to confront the result had he forced the issue:
Ivan Ilyitch’s chief torment was a lie,—the lie somehow accepted by everyone, that he was only sick, but not dying, and that he needed only to be calm, and trust to the doctors, and then somehow he would come out all right. But he knew that, whatever was done, nothing would come of it, except still more excruciating anguish and death. And this lie tormented him; it tormented him that they were unwilling to acknowledge what all knew as well as he knew, but preferred to lie to him about his terrible situation, and made him also a party to the lie. This lie, this lie, it clung to him, even to the very evening of his death; this lie, tending to reduce the strange, solemn act of his death to the same level as visits, curtains, sturgeon for dinner—it was horribly painful for Ivan Ilyitch. And strange! many times, when they were playing this farce for his benefit, he was within a hair’s breadth of shouting at them:
“Stop your foolish lies! you know as well as I know that I am dying, and so at least stop lying.”
But he never had the spirit to do this.
There is another element, too, that these days often conspires to isolate the mortally ill. I can think of no better word for it than
futility
. Pursuing treatment against great odds may seem like a heroic act to some, but too commonly it is a form of unwilling disservice to patients; it blurs the borders of candor and reveals a fundamental schism between the best interests of patients and their families on the one hand and of physicians on the other.
The Hippocratic philosophy of medicine declares that nothing should be more important to a physician than the best interests of the patient who comes to him for care. Although we live now in an era when the needs of the greater society sometimes come into conflict with a doctor’s judgment concerning what is best for his individual patient, there has never been any doubt that the goal of medical care is to overcome sickness and relieve suffering. Every medical student learns very early that it is sometimes necessary to add for a time to a patient’s suffering in order to overcome his sickness, and there are few people who do not understand and accept that necessity. This is especially true for the hundred or more diseases that comprise the various forms of cancer, where combinations of effective surgery, radiation, and chemotherapy commonly result in periods of debility and other severe temporary torments, if not frank complications. Few people faced with a diagnosis of potentially remediable malignant disease should be willing to give up the struggle if there is any reasonable chance that some promising form of treatment is available to lessen the ravages of the disease or cure it. To do anything less is not stoicism, but folly.
Once more, the dilemma faced by all of us when we find ourselves in these situations lies in the use of language. Here, the operative obscurities are words such as
reasonable
and
promising
. It is in such seemingly clear but actually ambiguous terminology that clues appear, exposing the schism often existing between the goals of doctors and the goals of the people they treat. At the cost of burdening these pages with even more autobiography, I shall use my own professional evolution as a physician to illustrate the subtle progression by which a young medical student who wants only to care for his sick fellows becomes transmuted unawares into the embodiment of a biomedical problem-solver.
Before there were two digits in my age, I had seen the hope (I choose the word deliberately) that a doctor’s presence brings to a worried family. There were several frightening emergencies during my mother’s long illness, even in the years before she had begun her descent to death. The mere knowledge that someone had gone to the drugstore phone to call the doctor, and the word that he was on the way, changed the atmosphere in our small apartment from terrified helplessness to a secure sense that somehow the dreadful situation could be made right. That man—the man who stepped across the threshold with a smile and an air of competence, who called each of us by name, who understood that beyond anything else we needed reassurance, and whose very entrance into our home conveyed it—that was the man I wanted to be.
My objective in becoming a physician was to be a general practitioner in the Bronx. In the first year of medical school, I learned how the body functions; in the second year, I learned how it gets sick. In the third and fourth years, I began to understand how to interpret the histories I elicited from my patients and to study the physical and chemical clues produced by their illnesses, that combination of overt and hidden findings that the eighteenth-century pathologist Giovanni Morgagni called “the cries of the suffering organs.” I studied the various ways of listening to my patients and looking at them so that I might be able to discern those cries. I was taught to probe orifices, read X rays, and seek meaning in the state of blood and cast-off waste products of various descriptions. In time, I knew exactly which tests to order so that the more obvious clues might be used to lead me to the hidden changes that are part of sickness. That process is pathophysiology. Mastering its tortuous patterns is the means by which to understand the details of the way normal mechanisms of healthy life somehow go awry. To understand pathophysiology is to hold the key to diagnosis, without which there can be no cure. The quest of every doctor in approaching serious disease is to make the diagnosis and design and carry out the specific cure. This quest, I call The Riddle, and I capitalize it so there will be no mistaking its dominance over every other consideration. The satisfaction of solving The Riddle is its own reward, and the fuel that drives the clinical engines of medicine’s most highly trained specialists. It is every doctor’s measure of his own abilities; it is the most important ingredient in his professional self-image.
By the time I finished medical school, I had discovered greater dimensions in the pursuit of diagnosis and ever-expanding challenges in carrying out successful treatment. The goal became to understand the evolution of a disease process so well that it could be combatted with exactly the right choices of excision, repair, biochemical modification, or any of the increasing variety of modalities that constantly make their appearance. The six years of my residency training was preparation for dealing with each aspect of The Riddle, which by the end of that time had become the fascination of my life. In me, my teachers had replicated themselves.
I had given up any thought of returning to be a local doctor in the Bronx or any place like it. I never forgot the need to be to my patients what the general practitioner had been to our family, but I realize now that his image was no longer the one I most admired. I was totally absorbed with The Riddle, and the doctor who inspired me was the doctor who was best at solving it.
All of my professional life, I have tried, as I believe the great majority of physicians do, to be the kind of doctor whose example led me to choose healing as my life’s work. But alongside that example has been another, more powerful image—the challenge that motivates most persuasively; the challenge that makes each of us physicians continue ever trying to improve our skills; the challenge that results in the dogged pursuit of a diagnosis and a cure; the challenge that has resulted in the astounding progress of late-twentieth-century clinical medicine—that foremost of challenges is not primarily the welfare of the individual human being but, rather, the solution of The Riddle of his disease.
We seek to treat our patients with the empathy that is so major a factor in their recovery, and we always try to guide them in making decisions that we think will lead to relief of their suffering. But that is not enough to sustain and improve our abilities, or even to maintain our enthusiasm. It is The Riddle that drives our most highly skilled and the most dedicated of our physicians.
In one of his
Precepts
, Hippocrates wrote, “Where love of mankind is, there is also love of the art of medicine,” and that is as true as it has ever been; were it otherwise, the burden of caring for our fellows would soon prove unbearable. Nevertheless, our most rewarding moments of healing derive not from the works of our hearts but from those of our intellects—it is there that the passion is most intense. I have come to realize the truth, and even the necessity that it should be so. As doctors, we must confront that about ourselves every time we undertake to care for another human being; as patients, we must understand that a physician’s driving quest to solve The Riddle will sometimes be at odds with our best interests at the end of life.
Every medical specialist must admit that he has at times convinced patients to undergo diagnostic or therapeutic measures at a point in illness so far beyond reason that The Riddle might better have remained unsolved. Too often near the end, were the doctor able to see deeply within himself, he might recognize that his decisions and advice are motivated by his inability to give up The Riddle and admit defeat as long as there is any chance of solving it, Though he be kind and considerate of the patient he treats, he allows himself to push his kindness aside because the seduction of The Riddle is so strong and the failure to solve it renders him so weak.
Patients are awed by their doctors, create a transference with them in the true psychoanalytic sense, and wish to please them, or at least not to be seen as a source of offense. Some believe that doctors always know exactly what they are doing, and that uncertainty is utterly alien to the superspecialists who treat the most seriously ill people in the hospital. They are convinced—and the more high-tech the doctor, the more their patients are convinced—that the men and women who treat them always have very good scientific reasons for recommending the courses of action they do.
Patients often have substantial reasons for not going further when only a diminishingly small possibility exists that they may survive. Some reasons are philosophical or spiritual, some are quite practical, and some arise simply from the conviction that what one gets after a major struggle for recovery is not worth what has to be endured in order to get it. As a very wise oncology nurse once told me, “For some people, even the certainty of coming out on the other side of weeks of distress doesn’t justify the physical and emotional price they have to pay.”
BOOK: How We Die
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