We sat alongside each other on the side of Bob"s rented hospital bed, and after a while I took one of his hands in mine. Doing that made it somehow easier for me to speak. We were two men of the same age with quite different experiences of life, and one of us had almost used up his future. But in the short time left to him, Bob was able to see a form of hope that was his alone. It was the hope that he would be Bob DeMatteis to his last breath, and that he would be remembered for the way he had lived. Keeping this last Christmas in the best possible way was an essential part of fulfilling that hope. Then, he told me, he would be ready for the hospice nurses to take him into his final days.
As I said good-bye to this uncommon man who had found a courage I had not dreamed possible for him, I was the one whose throat choked closed. Bob was becoming impatient to start the laborious process of dressing before his guests arrived, and I was a reminder of what lay before him when the party ended. As I prepared to step out into the snowy night, he called after me from the bedroom, cautioning me to be careful on the slippery hills: "It"s dangerous out there, Doc-Christmas is no time to die."
Bob made it all work that evening. He had Carolyn turn the rheostats down so that his guests would not see the full depth of his jaundice in the dimmed light. At dinner, he sat at the head of the happy, noisy table and pretended to eat, although he was long past being able to take sufficient food to get proper nourishment. Every two hours during the course of the long evening, he agonizingly dragged himself into the kitchen so that Carolyn might give him a shot of morphine to control his pain.
When all the guests had said their good-byes-so many friends of long years and decades never to be seen again-and Bob was back in bed, Carolyn asked him how the evening had been. To this day, she remembers his exact words: "Perhaps one of the best Christmases I ever had." And then he added, "You know, Carolyn, you have to live before you die."
Four days after Christmas, Bob was enrolled in the hospice home-care program, and not a day too soon. In addition to nausea and vomiting and the pain of his liver and pelvic tumor ma.s.ses, he was now having high fevers. On New Year"s Eve, he had a temperature of 106. His watery diarrhea was at times beyond control and frequently caught him unawares. Though it seemed impossible for the situation to worsen, it did. Finally, on January 21, Bob agreed to be admitted to the inpatient building of Connecticut Hospice in Branford. By then his liver, which in a normal state should not have extended lower than his rib margin, could be felt (even through the still-thick abdominal wall) ten inches lower than that. It was hugely enlarged, and almost all of it was cancer. In spite of the advanced degree of malnutrition, the hospice admission note records that "He was still ma.s.sively obese."
Although reluctant to give in, Bob admitted to being immensely relieved on entering the inpatient facility. His underlying anxiety and restlessness had again become a problem, requiring heavy doses of tranquilizers in addition to the morphine. He was able to take only limited amounts of liquid by mouth; after his admission, he seemed to weaken by the hour. Still he persisted in struggling to get up to urinate, and he made ineffectual attempts to walk. No matter his acceptance of death, he seemed unable to let go of life.
On the afternoon of Bob"s second day at the hospice, he suddenly became even more agitated than before. Carolyn and Lisa began to cry because they did not have it in their power to help him when he said that he wanted to die at that moment-immediately. As he stared pleadingly at them, he opened out his still-rotund arms and drew the two women close to him in the old protective embrace they knew so well from many times past. Holding his family together that way, he begged of them. "You have to tell me it"s okay to die. I won"t until you tell me it"s okay." He would accept nothing less than their permission, and only when they gave it did he become calm. A few moments later, he turned to Carolyn and said, "I want to die." And then, his voice a whisper, he added, "But I want to live." After that, he became quiet.
Bob was stuporous most of the next day. By afternoon, he had not spoken, but Carolyn believed he could still hear her voice. She was speaking softly, telling him how much his life had meant to them, when all at once his face broke out in a huge smile, as if through closed eyes he was seeing some glorious thing. "Whatever it was he saw," Carolyn later told me, "it must have been beautiful." Five minutes later, he was dead.
The funeral was huge, almost a public event in Bob"s city. The mayor was there and an honor guard of police met his coffin at the church. He was buried with a letter of good-bye in the pocket of his suit, from Lisa. As the cherry-wood casket was being lowered into the grave, Carolyn"s uncle noticed that its lid was smudged by a small stain, where Lisa"s tears had fallen on it.
Bob is buried in a Catholic cemetery about ten miles from my home. There are no monuments in those rolling hills of well-tended grave sites, as though to affirm each person"s equality in death; only footstones identify the resting places. I went to visit Bob"s grave during the time I was writing these last few pages, to pay homage to a man who had found a new meaning in his life when he knew he was soon to die. He had taught me that hope can still exist even when rescue is impossible. I would somehow forget his lesson when my brother fell ill a decade later, but that does not diminish its truth.
Carolyn had told me that while he was still able, Bob had arranged to have his favorite words from his favorite work of d.i.c.kens inscribed on his grave marker, but still I was unprepared for their effect when actually seen. Engraved across the granite face of the footstone was the epitaph by which Bob DeMatteis had chosen to be remembered: "And it was always said of him that he knew how to keep Christmas well."
XII.
The Lessons Learned RABBIS OFTEN END a memorial service with the sentence, "May his memory be for a blessing." It is a specific formula of words that is not familiar to the non-Jews who are present when it is said, and I have listened in vain for it in churches. Though it expresses what is obviously a universal wish, this simple thought deserves more frequent pondering by all of us, and not only in houses of worship. a memorial service with the sentence, "May his memory be for a blessing." It is a specific formula of words that is not familiar to the non-Jews who are present when it is said, and I have listened in vain for it in churches. Though it expresses what is obviously a universal wish, this simple thought deserves more frequent pondering by all of us, and not only in houses of worship.
The hope that brought a measure of peace to Bob DeMatteis was to be found in the memory he could create and in the meaning his life would have for those left after he was gone. Bob was a man who lived with the constant awareness that one"s existence is not only finite but always in danger of ending unexpectedly. Therein lay the seed of that awful anxiety induced by things medical, but therein also lay the germinal focus of his acceptance when the final illness announced itself.
The greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope we can all achieve, and it is the most abiding of all. Hope resides in the meaning of what our lives have been.
Other sources of hope are more immediate, but some of them will be impossible to attain. In my medical practice, I have always a.s.sured my dying patients that I would do everything possible to give them an easy death, but I have too often seen even that hope dashed in spite of everything I try. At a hospice too, where the only goal is tranquil comfort, there are failures. Like so many of my colleagues, I have more than once broken the law to ease a patient"s going, because my promise, spoken or implied, could not be kept unless I did so.
A promise we can keep and a hope we can give is the certainty that no man or woman will be left to die alone. Of the many ways to die alone, the most comfortless and solitary must surely take place when the knowledge of death"s certainty is withheld. Here again, it is the "I couldn"t take away his hope" att.i.tude that is so often precisely how a particularly rea.s.suring form of hope is never allowed to materialize. Unless we are aware that we are dying and so far as possible know the conditions of our death, we cannot share any sort of final consummation with those who love us. Without this consummation, no matter their presence at the hour of pa.s.sing, we will remain unattended and isolated. For it is the promise of spiritual companionship near the end that gives us hope, much more than does the mere offsetting of the fear of being physically without anyone.
The dying themselves bear a responsibility not to be entrapped by a misguided attempt to spare those whose lives are intertwined with theirs. I have seen this form of aloneness, and even unwisely conspired in it, before I learned better.
As my grandmother became no longer able, Aunt Rose gradually took over the management of our household and the mothering of its two boys. Even the matriarchal role in the extended family fell to her as Bubbeh relinquished it year by year. Early each morning, Rose went off to st.i.tch dresses for a garment manufacturer on Thirty-seventh Street, and ten hours later she arrived home to clean the house and prepare dinner. Old World Jews did not eat lightly, and our evening meal was the result of a great deal of hard work. I am a long distance and a long time from 2314 Morris Avenue, but yesterday"s memories of Thursday evenings are very clear, when Aunt Rose scrubbed and cleaned every corner of the apartment in preparation for the Sabbath, finally falling into bed near midnight, drained of energy. At six next morning, she was up again and off to work.
Rose did what she could to be brusque, but her manner was transparent. She had a pair of those blue eyes that signified our small band, and the twinkle in them was as sure to follow after an outburst of anger as is the inevitable sunny aftermath of a brief summertime shower. She was a sucker for a hug, and as we grew older, her need to appear stringently unrelenting in her expectations of her two boys slowly let itself be recognized as the love it really was. Though Harvey and I could usually tease her out of the censure that she never hesitated to express at the less admirable aspects of our behavior, we nevertheless feared her disapproval, which in my case usually took the form of denunciations, often in a colorful Yiddish, of my entire worldview and character. Aunt Rose was my little shtetl-bred superego. Harvey and I adored her.
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 s.n.a.t.c.hed 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 pa.s.sing, 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 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 reasonable and and promising 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 ill.u.s.trate the subtle progression by which a young medical student who wants only to care for his sick fellows becomes trans.m.u.ted 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 rea.s.surance, 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 pract.i.tioner 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 pract.i.tioner 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 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 pa.s.sion 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 psychoa.n.a.lytic 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."
Beside me as I write these paragraphs lies the chart of Miss Hazel Welch, a ninety-two-year-old woman who lived in the convalescent unit of a senior citizen"s residence complex about five miles from the YaleNew Haven Hospital. Although mentally alert, she required the nursing care of the unit because of such advanced arthritis and arteriosclerotic obstruction in the arteries of her legs that she could no longer walk una.s.sisted; at the time of the acute illness for which I treated her, she was on the semielective list for amputation of one of the toes of her left foot, which had become gangrenous. She was taking antiinflammatory medications for severe arthritis and was in remission from chronic leukemia. "Here a pivot, there a wheel, now a pinion, next a spring" were giving way, and Jefferson might have counseled me that it was folly to attempt to prevent the whole machine from surceasing motion entirely.
Shortly after noon on February 23, 1978, Miss Welch fell to the floor unconscious in the presence of one of the nursing aides. An ambulance took her to the emergency room of the YaleNew Haven Hospital, where she was found to have no measurable blood pressure; the physical findings were consistent with severe peritonitis. After the rapid intravenous infusion of fluids, she was sufficiently resuscitated to undergo a quick X-ray examination, which revealed a large amount of air free in her abdominal cavity. The diagnosis was clear: She undoubtedly had a perforated digestive tract, and the most likely source was an ulcer of the duodenum, just beyond the stomach.
By then completely alert and rational, Miss Welch refused an operation. In a broad Yankee inflection, she told me that she had been on this planet "quite long enough, young man" and didn"t wish to go on. There was no one, she said, to live for-the s.p.a.ce on her chart"s top page for next of kin bore the name of a trust officer at the Connecticut National Bank. To me, standing at the side of her gurney perfectly healthy and embosomed outside of that place by family and friends, her decision made no sense. I used every argument I could muster in trying to persuade her that the crystal clarity of her brain and the responsiveness of her leukemia meant that she had good years ahead. I was completely frank in telling her that, given the state of her atherosclerosis and the peritonitis, her chance of recovery from the required surgery was only about one in three. "But," I said, "one in three, Miss Welch, is a lot better than certain death, which is what happens if you don"t let us operate." That seemed self-evident, and I couldn"t imagine that anyone as obviously sensible as she could possibly believe otherwise. She remained adamant, and I left her alone to think about it, her chances of survival decreasing as the minutes ticked by.
I returned a quarter of an hour later. My patient was positioned half-upright on the gurney, scowling at me as though I were a middle-aged naughty boy. She reached out and took my hand, staring hard directly into my eyes as though charging me with a grave mission for whose failure she would hold me personally responsible. "I"ll do it," she said, "but only because I trust you." Suddenly, I felt a little less sure I was doing the right thing.
During the operation, I discovered a duodenal perforation so ma.s.sive that its repair required much more extensive surgery than I had antic.i.p.ated. The stomach had become almost completely separated from the duodenum, as though exploded away from it; Miss Welch"s abdomen was filled with corrosive digestive juices and whole pieces of the lunch she had eaten a few minutes before collapsing. I did what was necessary, closed the abdomen, and admitted my still-unconscious patient to the surgical intensive care unit. She had inadequate respiratory drive to breathe, so the anesthesiologist"s tube remained in her windpipe.
At the end of a week, Miss Welch was improving, although she was not mentally alert enough to understand what was happening around her. Finally, her mind cleared completely, and until the breathing tube could be removed from between her vocal cords two days later, she spent every minute of my twice-a-day-visits staring reproachfully at me. When she was able to speak, she lost no time in letting me know what a dirty trick I had pulled by not letting her die as she wished. I indulged her in this, certain that I had done the right thing, and with living evidence, I thought, to prove it. She had, after all, survived. But she saw things differently and didn"t hesitate to let me know I had betrayed her by minimizing the difficulties of the postoperative period. Knowing Miss Welch would have refused life-saving surgery if she had been aware of the kinds of things elderly arteriosclerotic people often endure in surgical intensive care units, I had in my description of the antic.i.p.ated postoperative days played down what she could realistically be expected to experience. She had been through too much, she said, and she didn"t trust me anymore. She was obviously one of those people to whom survival was not worth the cost, and I had not been completely forthcoming in predicting what that cost might be. Although my intentions were only to serve what I conceived to be her welfare, I was guilty of the worst sort of paternalism. I had withheld information because I was afraid the patient might use it to make what I thought of as a wrong decision.
Two weeks after her transfer back to her old room at the residence unit, Miss Welch had a ma.s.sive stroke and died in less than a day. In keeping with the instructions she had written in the presence of her trust officer on his first visit after her hospital discharge, no attempt was made to give her anything but nursing care. She wanted no repet.i.tion of her recent experience and emphatically said so in her written statement. Although the trauma of her peritonitis and the surgery had obviously strengthened the likelihood of her stroke, I suspect that her continuing anger at my well-intentioned deception also played a role. But perhaps the most important factor in my patient"s death may simply have been her wish not to continue living, which had been frustrated by my ill-advised operation. I had won out over The Riddle but lost the greater battle of humane patient care.
Had I carefully considered the factors I have described in this book"s chapters on aging, I would not have been so quick to recommend an operation. For Miss Welch, the effort was not justified, no matter what success might have resulted, and I was not wise enough to recognize it. I see things differently now. Had I the chance to relive this episode, or some others like it in my career, I would listen more to the patient and ask her less to listen to me. My objective was to grapple with The Riddle; hers was to use this sudden illness as a gracious way to die. She gave in only to please me.
There is a lie in the paragraph you have just read. I imply there that I would have acted differently, although I know I would probably have done exactly the same thing again, or risk the scorn of my peers. It is in such matters that ethicists and moralists run aground when they try to judge the actions of bedside doctors, because they cannot see the trenches from their own distant viewing point. The code of the profession of surgery demands that no patient as salvageable as Miss Welch be allowed to die if a straightforward operation can save her, and we who would break that fundamental rule, no matter the humaneness of our motive, do so at our own peril. Viewed by a surgeon, mine was strictly a clinical decision, and ethics should not have been a consideration. Had I let Miss Welch have her way, I would have had to defend the result at the weekly surgical conference (where it would certainly be seen as my my decision, not hers), before unbending colleagues to whom her death would seem a case of poor judgment, if not downright negligence of the clear duty to save life. I would almost certainly be castigated over my failure to overrule such a seemingly senseless wish. I can imagine what I might hear: "How could you let her talk you into it?" "Does the mere fact that an old lady wants to die mean you should be a party to it?" "A surgeon should only make clinical decisions, and the right clinical decision was to operate-leave moralizing to the ministers!" This is a form of peer pressure to which I will not be presumptuous enough to claim immunity. One way or another, the rescue credo of high-tech medicine wins out, as it almost always does. decision, not hers), before unbending colleagues to whom her death would seem a case of poor judgment, if not downright negligence of the clear duty to save life. I would almost certainly be castigated over my failure to overrule such a seemingly senseless wish. I can imagine what I might hear: "How could you let her talk you into it?" "Does the mere fact that an old lady wants to die mean you should be a party to it?" "A surgeon should only make clinical decisions, and the right clinical decision was to operate-leave moralizing to the ministers!" This is a form of peer pressure to which I will not be presumptuous enough to claim immunity. One way or another, the rescue credo of high-tech medicine wins out, as it almost always does.
My treatment of Miss Welch was based not on her goals but on mine, and on the accepted code of my specialty. I pursued a form of futility that deprived her of the particular kind of hope she had longed for-the hope that she could leave this world without interference when an opportunity arose. No matter her lack of family, the nurses and I could have seen to it that she did not die alone, at least insofar as empathetic strangers can do this for a friendless old person. Instead, she suffered the fate of so many of today"s hospitalized dying, which is to be separated from reality by the very biotechnology and professional standards that are meant to return people to a meaningful life.
The beeping and squealing monitors, the hissings of respirators and pistoned mattresses, the flashing multicolored electronic signals-the whole technological panoply is background for the tactics by which we are deprived of the tranquillity we have every right to hope for, and separated from those few who would not let us die alone. By such means, biotechnology created to provide hope serves actually to take it away, and to leave our survivors bereft of the unshattered final memories that rightly belong to those who sit nearby as our days draw to a close.
Every scientific or clinical advance carries with it a cultural implication, and often a symbolic one. The invention of the stethoscope in 1816, for example, can be viewed as having set in motion the process by which physicians came to distance themselves from their patients. Such an interpretation of the instrument"s role was, in fact, considered by some medical commentators of the time to be one of its advantages, since not many clinicians, then or now, feel at ease with an ear pressed up against a diseased chest. That and its image as a visible evidence of status remain to this day unspoken reasons for the instrument"s popularity. One need only spend a few hours on rounds with young resident physicians to observe the several roles played by this dangling evidence of authority and detachment.
Seen from the strictly clinical perspective, a stethoscope is nothing more than a device to transmit sounds; by the same kind of reasoning, an intensive care unit is merely a secluded treasure room of high-tech hope within the citadel in which we segregate the sick so that we may better care for them. Those tucked-away sanctums symbolize the purest form of our society"s denial of the naturalness, and even the necessity, of death. For many of the dying, intensive care, with its isolation among strangers, extinguishes their hope of not being abandoned in the last hours. In fact, they are are abandoned, to the good intentions of highly skilled professional personnel who barely know them. abandoned, to the good intentions of highly skilled professional personnel who barely know them.
Nowadays, the style is to hide death from view. In his cla.s.sic exposition of the customs a.s.sociated with dying, the French social historian Philippe Aries calls this modern phenomenon the "Invisible Death." Dying is ugly and dirty, he points out, and we do not easily tolerate anymore what is ugly and dirty. Death is therefore to be secluded and to occur in sequestered places: The hidden death in the hospital began very discreetly in the 1930"s and 1940"s and became widespread after 1950.... Our senses can no longer tolerate the sights and smells that in the early nineteenth century were part of daily life, along with suffering and illness. The physiological effects have pa.s.sed from daily life to the aseptic world of hygiene, medicine and morality. The perfect manifestation of this world is the hospital, with its cellular discipline.... Although it is not always admitted, the hospital has offered families a place where they can hide the unseemly invalid whom neither the world nor they can endure.... The hospital has become the place of solitary death.
Eighty percent of American deaths now occur in the hospital. The figure has gradually risen since 1949, when it was 50 percent; in 1958, it reached 61 percent, and in 1977, it was 70 percent. The increase is not only because so many of the dying have needed the high level of acute care that can be provided only within the hospital"s walls. The cultural symbolism of sequestering the dying is here as meaningful as the strictly clinical perspective of improved access to specialized facilities and personnel, and for most patients even more so.
The solitary death is now so well recognized that our society has organized against it, and well we should. From the wisdom of the legal doc.u.ments called advance directives to the questionable philosophies of suicide societies, a range of options exists, and at bottom the goal of each of them is the same: a restoration of certainty that when the end is near, there will be at least this source of hope-that our last moments will be guided not by the bioengineers but by those who know who we are.
This hope, the a.s.surance that there will be no unreasonable efforts, is an affirmation that the dignity to be sought in death is the appreciation by others of what one has been in life. It is a dignity that proceeds from a life well lived and from the acceptance of one"s own death as a necessary process of nature that permits our species to continue in the form of our own children and the children of others. It is also the recognition that the real real event taking place at the end of our life is our death, not the attempts to prevent it. We have somehow been so taken up with the wonders of modern science that our society puts the emphasis in the wrong place. It is the dying that is the important thing-the central player in the drama is the dying man; the dashing leader of that bustling squad of his would-be rescuers is only a spectator, and a groundling at that. event taking place at the end of our life is our death, not the attempts to prevent it. We have somehow been so taken up with the wonders of modern science that our society puts the emphasis in the wrong place. It is the dying that is the important thing-the central player in the drama is the dying man; the dashing leader of that bustling squad of his would-be rescuers is only a spectator, and a groundling at that.
In ages past, the hour of death was, insofar as circ.u.mstances permitted, seen as a time of spiritual sanct.i.ty, and of a last communion with those being left behind. The dying expected this to be so, and it was not easily denied them. It was their consolation and the consolation of their loved ones for the parting and especially for the miseries that had very likely preceded it. For many, this last communion was the focus not only of the sense that a good death was being granted them but of the hope they saw in the existence of G.o.d and an afterlife.
It is ironic that in redefining hope, I should find it necessary to call attention to what was until recently the very precinct in which most people would seek it. Much less commonly than at any other time in this millennium do the dying nowadays turn to G.o.d and the promise of an afterlife when the present life is fading. It is not for medical personnel or skeptics to question the faith of another, particularly when that other is facing eternity. Agnostics and even atheists have been known to find solace in religion at such times, and their drastic changes of heart are to be respected. How many times, when I was a young surgeon, did I hear a physician or nurse scoff at the sacrament of extreme unction because "It"s just like telling him that he"s about to die," and then see him or her slow to call the priest whose presence, had the patient only known the truth, he would have preferred over the doctor"s? Years ago my hospital had an illness category called the Danger List. When a Catholic"s name was entered on it, his priest was automatically summoned. Among the several reasons such a list is no longer in existence is the official reluctance to "scare" a patient by the appearance in his room of someone with a clerical collar, because this has been so often a person"s first intimation that his life is waning. In such ways did hospital officialdom deny hope, and even religious faith was subverted to accomplish it.
Sometimes a dying person"s source of hope can be as undemanding as the wish to live until a daughter"s graduation or even a holiday that has particular meaning. The medical literature doc.u.ments the power of this kind of hope, describing instances in which it has maintained not only the life but the optimism of a dying man or woman for the necessary period. Every doctor and many laymen can tell of individuals who survived weeks beyond the most extreme expectations in order to have one last Christmas or to await the sight of a dear face arriving from some distant land.
The lesson in all of this is well known. Hope lies not only in an expectation of cure or even of the remission of present distress. For dying patients, the hope of cure will always be shown to be ultimately false, and even the hope of relief too often turns to ashes. When my time comes, I will seek hope in the knowledge that insofar as possible I will not be allowed to suffer or be subjected to needless attempts to maintain life; I will seek it in the certainty that I will not be abandoned to die alone; I am seeking it now, in the way I try to live my life, so that those who value what I am will have profited by my time on earth and be left with comforting recollections of what we have meant to one another.
There are those who will find hope in faith and their belief in an afterlife; some will look forward to the moment a milestone is reached or a deed is accomplished; there are even some whose hope is centered on maintaining the kind of control that will permit them the means to decide the moment of their death, or actually to make their own quietus unhindered. Whatever form it may take, each of us must find hope in his or her own way.
There is a specific form of abandonment that is particularly common among patients near death from cancer, and it requires comment. I refer here to abandonment by doctors. Doctors rarely want want to give up. As long as there is any possibility of solving The Riddle, they will keep at it, and sometimes it takes the intervention of a family or the patient himself to put an end to medical exercises in futility. When it becomes obvious, though, that there is no longer a Riddle on which to focus, many doctors lose the drive that sustained their enthusiasm. As the long siege drags on and one after another treatment has begun to fail, those enthusiasms tend to fall by the wayside. Emotionally, doctors then tend to disappear; physically, too, they sometimes all but disappear. to give up. As long as there is any possibility of solving The Riddle, they will keep at it, and sometimes it takes the intervention of a family or the patient himself to put an end to medical exercises in futility. When it becomes obvious, though, that there is no longer a Riddle on which to focus, many doctors lose the drive that sustained their enthusiasm. As the long siege drags on and one after another treatment has begun to fail, those enthusiasms tend to fall by the wayside. Emotionally, doctors then tend to disappear; physically, too, they sometimes all but disappear.
Many reasons have been cited to explain why physicians abandon patients when they are beyond recovery. Studies are pointed to, indicating that of all the professions, medicine is the one most likely to attract people with high personal anxieties about dying. We become doctors because our ability to cure gives us power over the death of which we are so afraid, and loss of that power poses such a significant threat that we must turn away from it, and therefore from the patient who personifies our weakness. Doctors are people who succeed-that is how they survived the fierce compet.i.tion to achieve their medical degree, their training, and their position. Like other highly talented people, they require constant rea.s.surance of their abilities. To be unsuccessful is to endure a blow to self-image that is poorly tolerated by members of this most egocentric of professions.
I have also been impressed with another factor in the personalities of many doctors, perhaps linked to the fear of failure: a need to control that exceeds in magnitude what most people would find reasonable. When control is lost, he who requires it is also a bit lost and so deals badly with the consequences of his impotence. In an attempt to maintain control, a doctor, usually without being aware of it, convinces himself that he knows better than the patient what course is proper. He dispenses only as much information as he deems fit, thereby influencing a patient"s decision-making in ways he does not recognize as self-serving. This kind of paternalism was precisely the source of my error in treating Miss Welch.
The inability to face the consequences presented by loss of control often leads a physician to walk away from situations in which his power no longer exists, and this must certainly be an ingredient in the abrogation of responsibility that so often takes place at the end of a patient"s life. In the structured formulation he sees in The Riddle and in the systematic way he goes about its solution, the doctor creates order from chaos and finds the power to exert control over disease, nature, and his personal universe. When there is no longer a Riddle, such a doctor will lower his interest or lose it entirely. To stay and oversee the triumph of unrestrainable nature is to acquiesce to his own impotence.
Or, having lost the major battle, the doctor may maintain a bit of authority by exerting his influence over the dying process, which he does by controlling its duration and determining the moment at which he allows it to end. In this way, he deprives the patient and family of the control that is rightfully theirs. These days, many hospitalized patients die only when a doctor has decided that the right time has come. Beyond the curiosity and the problem-solving challenge fundamental to good research, I believe that the fantasy of controlling nature lies at the very basis of modern science. Even with all its art and philosophy, the modern profession of medicine has become, to a great extent, an exercise in applied science, with the goal of that conquest in mind. The ultimate aim of the scientist is not only knowledge for the sake of knowledge, but knowledge with the aim of overcoming that in our environment which he views as hostile. None of the acts of nature (or Nature) is more hostile than death. Every time a patient dies, his doctor is reminded that his own and mankind"s control over natural forces is limited and will always remain so. Nature will always win in the end, as it must if our species is to survive.
The necessity of nature"s final victory was expected and accepted in generations before our own. Doctors were far more willing to recognize the signs of defeat and far less arrogant about denying them. Medicine"s humility in the face of nature"s power has been lost, and with it has gone some of the moral authority of times past. With the vast increase in scientific knowledge has come a vast decrease in the acknowledgment that we still have control over far less than we would like. Physicians accept the conceit (in every sense of the word) that science has made us all-powerful and therefore the only proper judges of how our skills are to be used. The greater humility that should have come with greater knowledge is instead replaced by medical hubris: Since we can do so much, there is no limit to what should be attempted-today, and for this patient! this patient!
The more highly specialized the physician, the more likely is The Riddle to be his primary motivation. To medicine"s absorption with The Riddle, we owe the great clinical advances of which all patients are the beneficiaries; to medicine"s absorption with The Riddle, we also owe our disappointment when we cherish expectations of doctors that they cannot fulfill and perhaps should not be asked to fulfill. The Riddle is the doctor"s lodestone as an applied scientist; it is his albatross as a humane caregiver.
Oncologists are among the most determined of medical people, prepared to try almost any last-ditch effort to stave off inevitability-they can be seen on the barricades when other defenders have furled their flags. Like so many of their specialized colleagues, oncologists can be empathetic and beneficent; when they deal with patients, they are likely to review treatment and complications at length, lay out courses of action, and develop warm relationships with individuals and families alike. And yet they so often do it without ever being able to come to a real understanding of the spiritual nature of those they treat or of their subjective response to the looming face of death that always oversees their efforts. Sad to say, this is true of the great majority of the specialists who treat our most complex diseases. As I look back on my thirty years of practice, I am increasingly made aware that I have been much more the problem-solver than the man in the Bronx whose only wish was to nurture his patients.
If we should no longer expect from so many of our doctors what they cannot give, how are we, as patients, to be guided in making rational decisions? In the first place, those doctors can still guide us. In fact, the information they impart becomes even more valuable once we adjust to using it only as a way of comprehending the pathophysiology they know so well. Knowing that they are without the power to dominate our judgment, our specialists will be less p.r.o.ne to tell us things in a way that influences the decision they want us to make. It behoves every patient to study his or her own disease and learn enough about it to recognize the onset of that time when further treatment becomes a debatable issue. Such an education begins with learning how the normal body works, which much simplifies familiarity with the ways in which it is affected by disease. Clearly, cancer is a process particularly well suited to such an approach, and it should not be beyond the capacities of any but a small percentage of people to accomplish it.
In discussing The Riddle, I have not written about the sort of doctor who is much less under its spell than is the specialist. The relationship between a patient and his primary doctor will remain the core of cure, as it has been since the days when Hippocrates set down his reflections upon it. When there can be no cure, that relationship takes on an importance of immeasurable magnitude.
It would behoove our government to support the concept of family practice and the primary care that should be the major focus of any scheme of health delivery. Funding for its training programs in medical schools and teaching hospitals deserves to become a major priority, and the dedication of talented young people should be encouraged. Of all the possible advantages of such a system, I can think of none more valuable than the humanizing effect it would have on the way we die. So much must be borne at the time of death we should not add to it by asking advice only from specialized strangers, when it is possible to be guided with the insight of a long-standing relationship with our own doctor.
We bear more than pain and sorrow when we depart life. Among the heaviest burdens is apt to be regret, which deserves a word at this point. As inevitable as death is and as likely to be preceded by a difficult period, especially for people with cancer, there are additional pieces of baggage we shall all take to the grave, but from which we may somewhat disenc.u.mber ourselves if we antic.i.p.ate them. By these, I mean conflicts unresolved, breached relationships not healed, potential unfulfilled, promises not kept, and years that will never be lived. For virtually every one of us, there will be unfinished business. Only the very old escape it, and even then not always.
Perhaps the mere existence of things undone should be a sort of satisfaction in itself, though the idea would appear to be paradoxical. Only one who is long since dead while still seemingly alive does not have many "promises to keep, and miles to go before I sleep," and that state of inertness is not to be desired. To the wise advice that we live every day as though it will be our last, we do well to add the admonition to live every day as though we will be on this earth forever.
We do well also to avoid another unnecessary burden by remembering the caution of Robert Burns about the best-laid plans. Death rarely, if ever, acts according to our plans or even to our expectations. Everyone wants to do this thing of dying in the proper way, a modern version of ars moriendi ars moriendi and the beauty of final moments. Since human beings first began to write, they have recorded their wish for an idealized ending some call the "good death," as if any of us can ever be sure of it or have any reason to expect it. There are pitfalls of decision-making to be sidestepped and varieties of hope to seek, but beyond that we must forgive ourselves when we cannot achieve some preconceived image of dying right. and the beauty of final moments. Since human beings first began to write, they have recorded their wish for an idealized ending some call the "good death," as if any of us can ever be sure of it or have any reason to expect it. There are pitfalls of decision-making to be sidestepped and varieties of hope to seek, but beyond that we must forgive ourselves when we cannot achieve some preconceived image of dying right.
Nature has a job to do. It does its job by the method that seems most suited to each individual whom its powers have created. It has made this one susceptible to heart disease and that one to stroke and yet another to cancer, some after a long time on this earth and some after a time much too brief, at least by our own reckoning. The animal economy has formed the circ.u.mstances by which each generation is to be succeeded by the next. Against the relentless forces and cycles of nature there can be no lasting victory.
When at last the moment comes and the perception is inescapable that we have reached the point where, with Browning"s Jochanan Hakkadosh, our "feet tread the way of all flesh," it is inc.u.mbent on us to remember that it is not only the way of all flesh but the way of all life, and it has its own plans for us. Though we find clever ways to delay, there is no way to undo those plans. Even suicides yield to the cycle, and for all we know the stimulus for the action they take has been designed in some vast scheme that is just another example of the immutable laws of nature and its animal economy. Shakespeare has Julius Caesar reflect that: Of all the wonders that I yet have heard, It seems to me most strange that men should fear; Seeing that death, a necessary end, Will come when it will come.
Epilogue.
I AM MORE AM MORE concerned with the microcosm than the macrocosm; I am more interested in how a man lives than how a star dies; how a woman makes her way in the world than how a comet streaks across the heavens. If there is a G.o.d, He is present as much in the creation of each of us as He was at the creation of the earth. The human condition is the mystery that engages my fascination, not the condition of the cosmos. concerned with the microcosm than the macrocosm; I am more interested in how a man lives than how a star dies; how a woman makes her way in the world than how a comet streaks across the heavens. If there is a G.o.d, He is present as much in the creation of each of us as He was at the creation of the earth. The human condition is the mystery that engages my fascination, not the condition of the cosmos.
To understand the human condition has been the work of my life. During that life, which is now into its seventh decade, I have had my share of sorrows and my share of triumphs. Sometimes I think I have had far more than my share of both, but that impression probably stems from the inclination we all share, which makes each of us see our own existence as a heightened example of universal experience-a life that is somehow larger than life, and felt more deeply.
There is no way to foretell whether this is to be my last decade or whether there will be more-good health is a guarantee of nothing. The only certainty I have about my own death is another of those wishes we all have in common: I want it to be without suffering. There are those who wish to die quickly, perhaps with instantaneous suddenness; there are those who wish to die at the end of a brief, anguish-free illness, surrounded by the people and the things they love. I am one of the latter, and I suspect I am in the majority.
What I hope, unfortunately, is not what I expect. I have seen too much of death to ignore the overwhelming odds that it will not occur as I wish it. Like most people, I will probably suffer with the physical and emotional distress that accompany many mortal illnesses, and like most people I will probably compound the pained uncertainty of my last months by the further agony of indecision-to continue or to give in, to be treated aggressively or to be comforted, to struggle for the possibility of more time or to call it a day and a life-these are the two sides of the mirror into which we look when afflicted by those illnesses that have the power to kill. The side in which we choose to see ourselves reflected during the last days should reveal an image that is tranquil in its decision, but even that is not to be counted on.
I have written this book as much for myself as for everyone who reads it. By trooping some of the army of the hors.e.m.e.n of death across the field of our vision, I hope to recall the things I have seen, and make them familiar to everyone else. There is no need to look at the whole long line of mounted murderers; there are far more cavalrymen than any of us could have the stomach for. But they all use weapons not much different from those you have been reading about.
If they become just a bit more familiar, perhaps these hors.e.m.e.n will also become less frightening, and perhaps those decisions that must be made can be sought out in an atmosphere less charged with half-knowledge, anxiety, and unjustified expectations. For each of us, there may be a death that is the right death, and we should strive to find it, while accepting that it may prove ultimately to be beyond our grasp. The final disease that nature inflicts on us will determine the atmosphere in which we take our leave of life, but our own choices should be allowed, insofar as possible, to be the decisive factor in the manner of our going. Rilke wrote: Oh Lord, give each of us his own death, The dying, that issues forth out of the life In which he had love, meaning and despair.
The poet states it as a prayer, and, like all prayers, it may not be possible to answer it, even for G.o.d. For too many of us, the manner of death will prove to be beyond control, and no knowledge or wisdom can change that. During the dying of someone we love or of ourselves, it is valuable to know that there are still far too many things about which circ.u.mstance does not allow choices, even with the finest and most beneficently motivated of the forces of modern biomedical science on our side. It is not a judgment upon the many that they are fated to die badly, simply the nature of the thing that kills them.
The great majority of people do not leave life in a way they would choose. In previous centuries, men believed in the concept of ars moriendi ars moriendi, the art of dying. Those were times when the only possible att.i.tude to the approach of death was to let it happen-once certain symptoms made their appearance, there was no choice but to die the best way possible, at peace with G.o.d. But even then, most people went through a period of suffering that preceded the end; there was little but resignation and the consolation of prayer and family to ease the final time.
We live today in the era not of the art of dying, but of the art of saving life, and the dilemmas in that art are mult.i.tudinous. As recently as half a century ago, that other great art, the art of medicine, still prided itself on its ability to manage the process of death, making it as tranquil as professional kindness could. Except in the too-few programs such as hospice, that part of the art is now mostly lost, replaced by the brilliance of rescue and, unfortunately, the all-too-common abandonment when rescue proves impossible.
Death belongs to the dying and to those who love them. Though it may be sullied by the incursive havoc of disease, it must not be permitted to be further disrupted by well-meant exercises in futility. Decisions about continuation of treatment are influenced by the enthusiasm of the doctors who propose them. Commonly, the most accomplished of the specialists are also the most convinced and unyielding believers in biomedicine"s ability to overcome the challenge presented by a pathological process close to claiming its victim. A family grasps at a straw that comes in the form of a statistic; what is offered as objective clinical reality is often the subjectivity of a devout disciple of the philosophy that death is an implacable enemy. To such warriors, even a temporary victory justifies the laying waste of the fields in which a dying man has cultivated his life.
I say these things not to condemn high-tech doctors. I have been one of them, and I have shared the excitement of last-ditch fights for life and the supreme satisfaction that comes when they are won. But more than a few of my victories have been Pyrrhic. The suffering was sometimes not worth the success. I also believe that had I been able to project myself into the place of the family and the patient, I would have been less often certain that the desperate struggle should be undertaken.
When I have a major illness requiring highly specialized treat