How We Die (42 page)
Authors: Sherwin B Nuland
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 God 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 documents 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
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.
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.
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 competition to achieve their medical degree, their training, and their position. Like other highly talented people, they require constant reassurance 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!
today
, and for
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 prone 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 disencumber ourselves if we anticipate 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
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.
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.
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 circumstances 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.
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