Authors: Sherwin B Nuland
How We Die (37 page)
One morning in November of 1989, Harvey phoned to tell me that he had been having bowel irregularities and pain for a few weeks, and the previous afternoon had been found by his doctor to have a mass on the right side of his abdomen. There were to be definitive X rays later in the day, and he wanted me to be aware of what was going on. He tried to speak matter-of-factly, but we had been through far too much together for me to be fooled. Neither was he taken in by some reassuring words I managed to come up with. Even this most guileless of men was not to be sweet-talked out of his anxiety. We saw through each other, as brothers usually do, but only I knew just how bad his diagnosis was likely to be. A painful mass in a sixty-two-year-old man with bowel problems and a family history of intestinal cancer will almost certainly prove to be due to a partially obstructing malignant tumor—and one that is probably too far advanced for effective treatment.
The X rays confirmed my fears, and Harvey was admitted to a large university medical center. He chose it because his work had brought him into contact with a senior member of its gastroenterology staff. The surgeon I had recommended was away at a national meeting, and it was felt that impending completeness of the obstruction demanded urgent intervention. Accordingly, the operation was done by a man not personally known to me but highly praised by the gastroenterologist. Harvey was found to have a very large intestinal cancer that had invaded the tissues around his right colon and virtually all the draining lymph nodes. The tumor had deposited clumps of itself on numerous surfaces and tissues within the abdominal cavity, metastasized to at least half a dozen sites in the liver, and bathed the whole murderous outburst in a bellyful of fluid loaded with malignant cells—the findings could not have been worse. All of this had followed on a mere few weeks of symptoms.
Somehow, the surgical team managed to remove the part of the bowel in which the tumor had originated, so that Harvey’s obstruction was circumvented. Masses of cancer had to be left behind—in numerous tissues and in the liver. As Harvey recovered from the operation’s assault, I grappled with the twin issues of truthfulness and treatment. The decisions were mine to make, because it was clear that my brother would do as I recommended. But how was I to be objective in trying to make clinical judgments for my own blood? And yet, I could not avoid my responsibility by pleading the emotionality of a kid brother who knew that his first childhood friend was going to die. To do that would have constituted a kind of abandonment not only of Harvey but also of his wife, Loretta, and their two college-age children.
There was no likelihood of guidance, or even understanding, from Harvey’s doctors, who had by then shown themselves to be untouchably aloof and self-absorbed. They seemed too distanced from the truth of their own emotions to have any sense of ours. As I watched them strutting importantly from room to room on their cursory rounds, I would find myself feeling almost grateful for the tragedies in my life that had helped me to be unlike them. Decades of observing the highly trained university specialists who are my colleagues had persuaded me of the sensitivity of most and the isolation of the relatively few. In this place, the few seemed to be in charge of setting the scene.
With this burden on my shoulders, I made a series of mistakes. That I made them with what seemed like the best of intentions does not mitigate how I feel about them in retrospect. I became convinced that telling my brother the absolute truth would “take away his only hope.” I did exactly what I have warned others against.
Harvey had very blue eyes. So do I and so do all four of my children. Our blue eyes are an inheritance from my mother. Every time I visited my brother during the first of those three long postoperative weeks in the hospital, his pupils were constricted to pinpoints by morphine or some other narcotic, necessitated by the unremitting pain of his ribs-to-pubis incision. Although very near-sighted, he rarely wore his glasses during that time, and I saw in those wondrously blue eyes a look that had not been there since we were two kids playing stickball in the Bronx in the few hours free from our after-school jobs. Sickness had somehow restored to Harvey his innocence of early adolescence, and his trust. He seemed a boy again, this big brother to whom I had so often in my life turned for counsel and help. And I, in my vibrant health, remained a grown man. I resolved during those postoperative days that I would protect my brother from the anguish suffered by those who know there is no hope for cure. In retrospect, I now realize that I was trying to protect myself as well.
I knew of no form of chemo- or immunotherapy that might deter so advanced a cancer from its course. In New Haven, I “discussed the case” (a euphemism for what I really did, which was to scrape the brains of oncologists in my search for a miracle) with colleagues. Several times, I tried to talk things over with Harvey’s doctors, which I found an exercise in frustration and a lesson in medical arrogance. I heard about an experimental new treatment using an unusual combination of two agents in a way never tried before. One of the drugs, 5-fluorouracil, interferes with the metabolic processes of cancer cells, and the other, interferon, exerts antitumor effects in ways not yet completely understood. The 5-fluorouracil–interferon program had decreased tumor bulk in eleven of nineteen patients in the only group of any size that had yet been tested, but it had cured no one. The small number of treated patients had suffered an assortment of major toxic side effects, and there was even one chemotherapy-induced death.
I sought out the doctor at Harvey’s hospital who had experience with the drug combination. I let my instincts as a brother overwhelm my judgment as a surgeon who has spent his career treating people with lethal disease. What could have made me believe that a unique medical coincidence had somehow occurred to solve what my rational mind knew was insoluble? Could I really have thought that a potential cure or even a reasonable palliative had somehow magically appeared just at the moment when my brother was found to have a cancer I knew to be beyond any treatment? Looking back on it, I’m not sure what I thought—I seem only to have been motivated by my inability to tell Harvey the truth of his prognosis.
I could not face my brother and speak the words that should have been said; I couldn’t tolerate the immediate burden of hurting him, and so I exchanged the possibility of the comfort that may come with an unhampered death for the misconceived “hope” I thought I was giving him.
I had looked into those boyishly trusting blue eyes and seen my brother asking me for deliverance. I knew I was not able to give it, but I knew also that I could not bring myself to deprive him of the hope that I would somehow find a way. I told him about the cancer in his colon and the metastases in his liver but chose not to reveal the extent of the deposits elsewhere or the significance of the fluid. At no time did I ever consider sharing with him what I knew to be the virtually certain prognosis that he would not survive till summer. In every way, I had returned to the misconceived paternalistic dictum of the professors who taught me a generation ago: “Share your optimisms and keep your pessimisms to yourself.”
In all of this, I took my cues from Harvey’s eyes and his words. No one who has treated cancer patients will ever discount the power of the subconscious mechanism we call denial, which is both friend and enemy of a person seriously ill. Denial protects while it hinders, and softens for a moment what it eventually makes more difficult. As much as I applaud Elisabeth Kübler-Ross’s attempt to categorize a sequence of responses to the diagnosis of mortal illness, every experienced clinician knows that some patients never, at least overtly, progress beyond denial; many others retain large elements of it right to the end, in spite of every effort that might be made by a physician to clarify each issue as it arises. Explanations of the forcefulness of denial’s influence are themselves often denied. Harvey Nuland had a first-class mind and two perfectly good ears, not to mention the keen degree of insight common in those accustomed to adversity, and yet—again and again—I was to be taken aback by the magnitude of his denial, until near his last days. There was something in him that refused the evidence of his senses. The clamor of his wish to live drowned out the pleadings of his wish to know.
Denial is one of two factors that immeasurably complicate our best intentions when, as physicians or the beloved of a dying person, we seek to enlist him as a full participant in choices that must be made in the days remaining. Few dying people with a clear understanding of the inevitability of their disease process are willing to suffer through heroic and debilitating attempts to fight off an end that seems close. It is in the “clear understanding of their disease process,” however, that reason and logic sometimes founder, and denial is a major element that stands in the way. Denial is a significant factor, for example, in the surprising frequency with which dying people refuse to confront the nearness of circumstances they anticipated when, while still healthy, they signed advance directives prohibiting major resuscitative efforts. When the chips are down, almost no one wants his life to end, and one good way for the conscious mind to avoid it is for the unconscious mind to deny that it is about to happen.
The other hindrance to full participation is the refusal of many patients to exercise their right to independent thought and self-determination—in other words, their control. The psychoanalyst and legal scholar Jay Katz has used the term
psychological autonomy
to denote this right of independence. Many a patient worn down by the ravages of illness or overwhelmed by the immediacies of a dire situation will be unwilling or emotionally unable to use his autonomy. The need to be cared for and to be relieved of responsibilities is not easily dealt with under such circumstances, and it may lead to wrong decisions. But the problem may be lessened if both patient and caregivers reflect on it together. When this is done, a dying man will sometimes decide that he wants to participate much more actively than he thought he could. If he does not, this, too, must be respected.
psychological autonomy
to denote this right of independence. Many a patient worn down by the ravages of illness or overwhelmed by the immediacies of a dire situation will be unwilling or emotionally unable to use his autonomy. The need to be cared for and to be relieved of responsibilities is not easily dealt with under such circumstances, and it may lead to wrong decisions. But the problem may be lessened if both patient and caregivers reflect on it together. When this is done, a dying man will sometimes decide that he wants to participate much more actively than he thought he could. If he does not, this, too, must be respected.
In trying to do the right thing for Harvey, I became what he wanted me to be, and in so doing fulfilled both his fantasy of me and my own: the smart kid brother who had gone off to medical school and grown up to be the all-knowing and quite omnipotent medical seer. I could not deny him a form of hope that he seemed to need. I would marshal the forces of cutting-edge medicine and rescue him from the brink of death. This is every doctor’s most pervasive near-conscious self-image, and my brother’s eyes persuaded me to succumb to it. Had I been wiser, or consulted disinterested colleagues who knew me well, I might have understood that my way of giving Harvey the hope he asked for was not only a deception but, given what we knew about the toxicity of the experimental drugs, an almost certain source of added anguish for all of us.
Harvey required three further hospitalizations in the ten months of life that were left to him after his operation. He was admitted to monitor the initiation of the chemotherapy, and near the end he had to return when growing tumor deposits obstructed his intestine again, this time completely. The obstruction spontaneously opened just enough to let him take sufficient liquids by mouth to avoid reoperation, but not to maintain even the dwindling state of his previous nutrition. As difficult as was this last period in the hospital, it was the one before it that has left the most tormenting memories.
Harvey’s son, Seth, had taken a year’s leave of absence from school to work on a kibbutz in Israel, but came home to be his father’s primary caregiver because Harvey insisted that his wife, Loretta, not give up her full-time job at a local community college. Seth phoned me one Friday evening to tell me that Harvey had been lying on a stretcher outside the hospital’s emergency room for two days, suffering the effects of severe drug toxicity and passing in and out of coma. He, his sister, Sara, and Loretta had been taking turns at his side, though he often did not know they were there. No bed was available on any floor in the entire building. The toxic effects of the drugs—nausea, diarrhea, depression of the bone marrow’s ability to make white blood cells—were a problem from the start but had lately become increasingly unmanageable. Obviously, things were now out of control. The professor who was Harvey’s oncologist had gone away for the weekend and his training fellows seemed uninterested or unable to do much beyond ordering an intravenous drip.
When I arrived at the hospital the next morning, I found every cubicle in the chaotic emergency room occupied. Crowded into the narrow corridor outside were at least seven stretchers, on which lay some of the sickest people I had ever seen packed into one small area, and almost all of them appeared to have AIDS or advanced malignancy. As I picked my way carefully through the narrow spaces between patients and their anxious families and friends, I looked up and saw my nephew standing disconsolately next to a gurney on which lay his unconscious father. At the foot of the gurney sat my niece, hunched over and staring at the floor. She looked in my direction and tried to give me a wan smile, but tears began streaming down her face.
During all of those three days when Harvey was passing in and out of stupor in that cluttered hospital corridor, his temperature had been ranging between 102 and 104 degrees. In spite of valiant efforts by the overwhelmed nurses attempting to provide at least a modicum of care for everyone, and the help given Harvey by his wife and children, he had lain for long periods of time in the liquid diarrhea that periodically poured spontaneously out of him in response to the ravaging effect of the drugs on his intestinal tract. Even his periods of consciousness were not completely lucid, and most of the time he was uncertain of either his whereabouts or his condition.
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