How We Die (41 page)
Authors: Sherwin B Nuland
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 Yale–New 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 unassisted; 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 Yale–New 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 space 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 massive that its repair required much more extensive surgery than I had anticipated. 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 anticipated 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 massive 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 repetition 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
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
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
abandoned, to the good intentions of highly skilled professional personnel who barely know them.
are
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 classic exposition of the customs associated with dying, the French social historian Philippe Ariès 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 passed 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 documents 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 assurance 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
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.
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.
In ages past, the hour of death was, insofar as circumstances permitted, seen as a time of spiritual sanctity, 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 God and an afterlife.
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