How We Die (36 page)
Authors: Sherwin B Nuland
Actually, cancer cachexia is sometimes present even in people whose disease is still localized and relatively small, so it is clear that factors account for it other than a tumor’s gobbling up of its host’s resources. Though a tumor is capable of depriving its host of some essential nutrients, the concept of parasitizing may be, in fact, a simplistic way of looking at far more complicated causes of its ability to deplete resources. Changes in taste perception, for example, and local tumor effects such as obstruction and swallowing problems sometimes contribute to inadequate intake, as do chemotherapy and X-ray treatment. Numerous studies of people with malignancies reveal various kinds of abnormalities in the utilization of carbohydrates, fats, and proteins, the causes of which are uncertain. Some tumors even seem capable of increasing a patient’s expenditure of energy, thereby contributing to the inability to maintain weight. To add to the problem, certain malignancies and even some of the host’s own white blood cells (monocytes) have been shown to release a substance appropriately given the name cachectin, which decreases appetite by direct action on the brain’s feeding center. Cachectin is not the only such agent. It is likely that tumors of all sorts are capable of secreting various hormonelike substances which produce generalized effects on nutrition, immunity, and other vital functions that until recently were attributed to the parasitizing effects of the growth itself.
Malnutrition causes problems far beyond weight loss and exhaustion. The healthy body adapts to ordinary starvation by using fats as its main energy source, but this process is not effective in cancer, with the result that protein must be utilized. Not only does this and the lessened food intake cause muscle wasting; the decreased protein levels contribute to the dysfunction of organs and enzyme systems, and may significantly affect the immune response. There is evidence that one of the substances released by tumor cells further depresses immunity. Although this may, at least theoretically, enhance cancer growth, that untoward effect seems much less important than the fact that depressed immunocompetence, especially when magnified by chemotherapy and radiation, increases susceptibility to infection.
Pneumonia and abscesses, along with urinary and other infections, are frequently the immediate causes of death of cancer patients, and sepsis is their common terminal event. The profound weakness of severe cachexia does not permit effective coughing and respiration, increasing the chances of pneumonia and the inhalation of vomitus. The final hours are sometimes accompanied by those deep, gurgling respirations that are one of the forms of the death rattle, quite distinct from the agonal bark of a James McCarty.
Near the end, a decreased volume of circulating blood and extracellular fluid not infrequently leads to a gradual decrease in blood pressure. Even if this does not proceed to shock, it may cause organs such as the liver or kidney to fail because of chronic lack of sufficient nutrients and oxygen, although they are not directly involved with tumor. Since many people with cancer are in an older age group, the various forms of depletion often induce stroke, myocardial infarction, or heart failure. Of course, the presence of a generalized disease of metabolism, like diabetes, complicates the problems enormously.
Thus far, only those cancers have been mentioned that begin as tumors originally localized to a specific organ or tissue. A smaller group of malignant diseases have a more generalized distribution from the very beginning, or arise in multiple sites of a particular kind of tissue, specifically the blood and lymph systems. Leukemia, for example, is a cancer of the tissues responsible for the production of white blood cells, and lymphoma is a malignancy of lymph glands and similar structures. Patients with leukemia and lymphoma are particularly prone to infection, and it is a leading cause of death in those malignancies. One of the common forms of lymphoma is Hodgkin’s disease.
I cannot mention Hodgkin’s disease without calling attention to a remarkable accomplishment that is in many ways exemplary of the biomedical achievements of the last third of the twentieth century. Thirty years ago, virtually every patient with Hodgkin’s disease died of it, unless claimed by something else in the several-year interval between diagnosis and the terminal phase. Since then, improved understanding of the way in which the disease distributes itself in the lymph glands, and its responsiveness to appropriate programs of chemotherapy and supervoltage X-ray, have resulted in five-year disease-free survival of approximately 70 percent, which is as high as 95 percent for patients whose disease is discovered when its extent is still limited; recurrence rates after this period are low and decrease with each year. Not only Hodgkin’s disease but lymphomas in general are now among the most curable of all cancers.
The changed outlook for people with lymphoma is only one example of extraordinary progress in treating cancer. Another is childhood leukemia. Four out of five children with this disease have a form of it called acute lymphoblastic leukemia, previously fatal in every case; today, the five-year rate of continuous remission of acute lymphoblastic leukemia is 60 percent, and most of these youngsters will be cured. Although there have thus far been only a few other success stories of the sheer magnitude of these two, the general trend in the campaign against cancer is favorable enough to justify cautious optimism. Basic research, new ways of interpreting the clinical phenomena of disease, innovative applications of pharmacology and the physical sciences, and the willingness of informed patients to enroll in large-scale trials of promising treatments are among the reasons for the vast changes over the past few decades.
In the year I was born, 1930, only one in five people diagnosed with cancer survived five years. By the 1940s, the figure was one in four. The effect of modern biomedicine’s research capacity began to make itself felt in the 1960s, when the proportion of survivors reached one in three. At the present time, 40 percent of all cancer patients are alive five years after diagnosis; making proper statistical allowances for those who die of some unrelated cause, such as heart disease or stroke, 50 percent survive at least that long. It is well known that those who reach the five-year milestone free of disease face greatly decreased odds of eventual recurrence of their malignancy. Virtually all of the progress has been made possible by a combination of earlier diagnosis and the improved treatment resulting from the factors listed in the preceding paragraph. Improved treatment and the possibility of success of the constantly appearing innovative approaches to advanced disease bring hope to today’s cancer patient. Paradoxically, and sometimes tragically, that kind of hope is the very thing that has led to some of the most error-fraught dilemmas that patients and their doctors are compelled to face today.
My clinical career encompasses a period during which a realistic expectation first began to be felt in the scientific community that malignant disease would prove amenable to treatment based on an understanding of cellular biology rather than the ages-old oversimplifications of surgery. As more was learned about the cancer cell, new and increasingly effective ways were developed to combat its unchecked ravages. With the optimism born of therapeutic successes came a determined cockiness that sometimes goes beyond reason; it finds expression in the philosophy that treatment must be pursued until futility can be proven, or at least proven to the satisfaction of the physician.
The boundaries of medical futility, however, have never been clear, and it may be too much to expect that they ever will be. It is perhaps for this reason that there has arisen the conviction among doctors—more than a mere conviction, it is nowadays felt by many to be a responsibility—that should error occur in the treatment of a patient, it must always be on the side of doing more rather than less. Doing more is likely to serve the doctor’s needs rather than the patient’s. The very success of his esoteric therapeutics too often leads the physician to believe he can do what is beyond his doing and save those who, left to their own unhindered judgment, would choose not to be subjected to his saving.
XI
Hope and the Cancer Patient
A
YOUNG DOCTOR
learns no more important lesson than the admonition that he must never allow his patients to lose hope, even when they are obviously dying. Implicit in that oft-repeated counsel is the inference that a patient’s source of hope is the doctor himself, and the resources he commands; thus, only a doctor has the power to offer hope, to withhold it, or even to take it away. There is a great deal of truth in such an assumption, but it is not the whole story. Beyond the medical establishment—and beyond even the capability of one’s own physician, no matter his beneficence—is the power that rightfully belongs to the patient and those who love him. In this chapter and the next, I will write of people with terminal cancer, some of their kinds of hope, and how I have seen them enhanced or enfeebled—and sometimes destroyed altogether.
YOUNG DOCTOR
learns no more important lesson than the admonition that he must never allow his patients to lose hope, even when they are obviously dying. Implicit in that oft-repeated counsel is the inference that a patient’s source of hope is the doctor himself, and the resources he commands; thus, only a doctor has the power to offer hope, to withhold it, or even to take it away. There is a great deal of truth in such an assumption, but it is not the whole story. Beyond the medical establishment—and beyond even the capability of one’s own physician, no matter his beneficence—is the power that rightfully belongs to the patient and those who love him. In this chapter and the next, I will write of people with terminal cancer, some of their kinds of hope, and how I have seen them enhanced or enfeebled—and sometimes destroyed altogether.
Hope
is an abstract word. In fact, it is more than just a word; hope is an abstruse concept, meaning different things to each of us during different times and circumstances of our lives. Even politicians know its hold on the human mind, and the mind of the electorate.
is an abstract word. In fact, it is more than just a word; hope is an abstruse concept, meaning different things to each of us during different times and circumstances of our lives. Even politicians know its hold on the human mind, and the mind of the electorate.
Scanning my
Webster’s Unabridged
, I find five separate interpretations of the meaning of the noun
hope
, and that doesn’t include the synonyms. The meanings listed range from “the highest degree of well-founded expectation” to expectation that is “at least slight.” In a separate entry is to be found an example of usage for
hope
as an intransitive verb, and herein may lie the crux of the matter for many patients suffering with terminal cancer:
“to hope against hope,”
which the lexicographers describe as “having hope though it seems to be baseless.” A physician has no greater obligation than to be sure that no hope is baseless if he has given his patient reason to believe in it.
Webster’s Unabridged
, I find five separate interpretations of the meaning of the noun
hope
, and that doesn’t include the synonyms. The meanings listed range from “the highest degree of well-founded expectation” to expectation that is “at least slight.” In a separate entry is to be found an example of usage for
hope
as an intransitive verb, and herein may lie the crux of the matter for many patients suffering with terminal cancer:
“to hope against hope,”
which the lexicographers describe as “having hope though it seems to be baseless.” A physician has no greater obligation than to be sure that no hope is baseless if he has given his patient reason to believe in it.
When the
Oxford English Dictionary
is consulted, there are no fewer than sixty examples illustrating the different uses of the noun. Truly, hope springs eternal, if not necessarily in the human breast, at least in the human propensity for making a word mean “just what I choose it to mean—neither more nor less,” as Lewis Carroll’s Humpty Dumpty scornfully proclaimed to Alice. The meaning that hope brings is perhaps best expressed by Samuel Johnson: “Hope,” wrote England’s greatest authority on words, “is itself a species of happiness, and perhaps the chief happiness which this world affords.”
Oxford English Dictionary
is consulted, there are no fewer than sixty examples illustrating the different uses of the noun. Truly, hope springs eternal, if not necessarily in the human breast, at least in the human propensity for making a word mean “just what I choose it to mean—neither more nor less,” as Lewis Carroll’s Humpty Dumpty scornfully proclaimed to Alice. The meaning that hope brings is perhaps best expressed by Samuel Johnson: “Hope,” wrote England’s greatest authority on words, “is itself a species of happiness, and perhaps the chief happiness which this world affords.”
All of the definitions of hope have one thing in common: They deal with the expectation of a good that is yet to be, a perception of a future condition in which a desired goal will be achieved. In a very perceptive passage in his book
The Nature of Suffering
, the medical humanist Eric Cassell writes with great sensitivity of the meaning of hope in times of serious illness: “Intense unhappiness results from a loss of that future—the future of the individual person, of children, and of other loved ones. It is in this dimension of existence that hope dwells. Hope is one of the necessary traits of a successful life.”
The Nature of Suffering
, the medical humanist Eric Cassell writes with great sensitivity of the meaning of hope in times of serious illness: “Intense unhappiness results from a loss of that future—the future of the individual person, of children, and of other loved ones. It is in this dimension of existence that hope dwells. Hope is one of the necessary traits of a successful life.”
I would argue that of the many kinds of hope a doctor can help his patient find at the very end of life, the one that encompasses all the rest is the belief that one final success may yet be achieved whose promise vanquishes the immediacy of suffering and sorrow. Too often, physicians misunderstand the ingredients of hope, thinking it refers only to cure or remission. They feel it necessary to transmit to a cancer-ridden patient, by inference if not by actual statement, the erroneous message that it is still possible to attain months or years of symptom-free life. When an otherwise totally honest and beneficent physician is asked why he does this, his answer is likely to be some variation of, “Because I didn’t want to take away his only hope.” This is done with the best of intentions, but the hell whose access road is paved with those good intentions becomes too often the hell of suffering through which a misled person must pass before he succumbs to inevitable death.
Sometimes it is really to maintain his own hope that the doctor deludes himself into a course of action whose odds of success seem too small to justify embarking on it. Rather than seeking ways to help his patient face the reality that life must soon come to an end, he indulges a very sick person and himself in a form of medical “doing something” to deny the hovering presence of death. This is one of the ways in which his profession manifests the entire society’s current refusal to admit the existence of death’s power, and perhaps even death itself. In such situations, the doctor resorts to a usually ineffective delaying action that utilizes what has been called by a leading physician of the generation just past, William Bean of the University of Iowa, “the busy paraphernalia of scientific medicine, keeping a vague shadow of life flickering when all hope is gone. This may lead to the most extravagant and ridiculous maneuvers aimed at keeping extant certain representative traces of life, while final and complete death is temporarily frustrated or thwarted.”
Dr. Bean was referring here not just to the respirators and other end-of-life artificialities but to the whole gamut of stratagems whereby we attempt to turn our eyes away from the fact that nature always wins. This is the baseless hope that contradicts expectation; it was the kind of “hope against hope” to which I succumbed a few years ago when my own brother was diagnosed with widely metastatic intestinal cancer.
Harvey Nuland was a healthy sixty-two-year-old man who occasionally visited a doctor when he was concerned about some specific symptom, but otherwise was not inclined to undergo medical surveillance. He carried ten to fifteen extra pounds on his compact frame, but he was hardly obese. His work as an executive partner in a large New York accounting firm was a source of enormous gratification for him, although it demanded long hours and great responsibility—perhaps
because
it demanded long hours and great responsibility. The focus of my brother’s life was not his work, however. Harvey’s happiness was invested in his family. He had not married until his late thirties and did not become a father until he was past forty. That, and the disjointed nature of our lives as he and I were growing up, may have been the reasons that the closeness of his family became the paramount fact of his life, almost as though it had been sanctified by having come as such a late blessing.
because
it demanded long hours and great responsibility. The focus of my brother’s life was not his work, however. Harvey’s happiness was invested in his family. He had not married until his late thirties and did not become a father until he was past forty. That, and the disjointed nature of our lives as he and I were growing up, may have been the reasons that the closeness of his family became the paramount fact of his life, almost as though it had been sanctified by having come as such a late blessing.
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