How We Die (38 page)
Authors: Sherwin B Nuland
I spoke to the harried resident physician who had been calling the admitting office over and over to try to place some of her sickest patients, and she agreed to make one more attempt, happy at the opportunity to use my medical connection to help at least one of them get into a real bed. An impressionable clerk must have been on duty, because the strategy worked—within two hours, Harvey was upstairs on one of the nursing floors. As we wheeled him toward the elevator, I sneaked a last guilty look in the direction of the space alongside the one we were vacating, where an exhausted boy not much older than my nephew was hovering over a blanket-covered stretcher. He was speaking softly to his shivering friend, another young man close to death from AIDS.
Harvey paid a high price for the unfulfilled promise of hope. I had offered him the opportunity to try the impossible, though I knew the trying would be bought at the expense of major suffering. Where my own brother was concerned, I had forgotten, or at least forsaken, the lessons learned from decades of experience. Thirty years earlier, when there was no chemotherapy, Harvey would probably have died at about the same time that he eventually did, of the same cachexia, insufficiency of the liver, and chronic chemical imbalance, but his death would have been without the added devastation of futile treatment and the misguided concept of “hope” that I had been reluctant to deny him and his family, as well as myself. When I have explained the high frequency of dangerous toxicity of certain desperate forms of treatment whose likelihood of success is remote, some of my advanced cancer patients have wisely chosen to do nothing, and found their hope in other ways.
By the time Harvey recovered from this nearly lethal episode, his liver metastases, which had initially responded to the new treatment by a shrinkage of 50 percent, were once more enlarging. Because of this and the fact that the other areas of tumor had never stopped growing, it was clear that there was no longer any justification for the continuing chemotherapy. He returned home to die.
It was at this point that the local hospice was called in. I had been a board member of the Connecticut Hospice, and many of my terminally ill cancer patients had benefited from the care that these devoted nurses and doctors provide. Their goal is comfort, and their concept of comfort includes the totality of the life of patients and their families. The local hospice set to work immediately, showing Loretta how she could organize the household in ways that would minimize Harvey’s distress. Seth was taught to administer medications for pain and nausea, and learned useful techniques to help his father get around the house.
One additional hospitalization became necessary when continued growth of the cancer finally obstructed the intestine. So many areas of small bowel were tethered into the encroaching tumor mass that no surgery was possible. Just when the situation seemed to have reached its conclusion, the gut spontaneously opened just enough so that Harvey could return home. This time, I asked my original choice of surgeon to take over, and I will ever be grateful to him for restoring to all of us a sense of commitment and kindness, as well as common sense.
Even with the frequent hospice visits and the selfless care given by Seth, who had by then become Harvey’s constant companion and his nurse, the pain and increasing weakness were difficult to manage. The narrowness of the intestinal passage prevented retention of any but a little nourishment; medication had to be given by suppository. Harvey had already lost a great deal of weight, but now his cachexia rapidly worsened.
When I visited, Harvey and I would sit together on the couch and try to keep each other’s spirits up. A few times, when we were briefly alone, we talked about Loretta and the kids and how things would be after he was gone. Sometimes we spoke not of the future lost to him but of the long-ago past that seemed like yesterday, when we were boys in the Bronx speaking Yiddish to Bubbeh. Gone were the petty irritations and occasional conflicts that arise when two strong-willed brothers marry and their lives go off in different directions. It comforted me, in those last weeks, to remind Harvey of the several troubled times I had experienced decades before, when he was the one person who knew how to help me—more than twenty years earlier, I had left all that mattered in my life and traveled to a distant cheerless shore, from which I returned only because he never doubted that I would. No matter the remoteness that had sometimes come between us, neither had ever doubted the other’s love, but now it became important for each of us to say it. I kissed him each time I left to return to New Haven. The last time was two days before his long travail ended quietly in the bed he and Loretta had shared for so many years.
During the several days after the funeral, I went each morning with Seth and Sara to recite the mourner’s prayer, the Kaddish, at the synagogue where less than two years earlier I had gone to a testimonial dinner honoring Harvey at the conclusion of his term as president of the congregation. I knew the words of the prayer by heart because I had needed them often since that cold December morning half a century ago when Harvey and I stood together at our mother’s open grave, saying them for the first time.
In this high-tech biomedical era, when the tantalizing possibility of miraculous new cures is daily dangled before our eyes, the temptation to see therapeutic hope is great, even in those situations when common sense would demand otherwise. To hold out this kind of hope is too frequently a deception, which in the long run proves far more often to be a disservice than the promised victory it seems at first.
Mine is not the first voice to suggest that as patients, as families, and even as doctors, we need to find hope in other ways, more realistic ways, than in the pursuit of elusive and danger-filled cures. In the care of advanced disease, whether cancer or some other determined killer, hope should be redefined. Some of my sickest patients have taught me of the varieties of hope that can come when death is certain. I wish I could report that there were many such people, but there have, in fact, been few. Almost everyone seems to want to take a chance with the slim statistics that oncologists give to patients with advanced disease. Usually, they suffer for it, they lay waste their last months for it, and they die anyway, having magnified the burdens they and those who love them must carry to the final moments. Though everyone may yearn for a tranquil death, the basic instinct to stay alive is a far more powerful force.
About ten years ago, I cared for a man whose despair and paralyzing fear of treatment drove him to seek hope in other than medical efforts. He gave up the possibility of cure and became reconciled to his death, or at least determined that if miracles were to occur, they would come from within himself and not from some enthusiastic oncologist.
Robert DeMatteis was a forty-nine-year-old attorney and a political leader in a small Connecticut city, and he was terrified of doctors. Fourteen years earlier, I had treated him for extensive injuries following an automobile accident, and I was astonished at his inability, during the period of hospitalization, to tolerate so much as the most minimal discomfort or even the possibility that it might occur. The fact that his wife, Carolyn, was a nurse diminished not one iota of the apprehension that visibly mounted in him at the mere approach of a white-coated figure. Carolyn once told me that he used to insist she change out of her uniform while still at the hospital where she worked, because the sight of it in his own home made him anxious.
Bob was the sort of man to whom no one gave orders. He seemed to take pride in being obstinate, and one of the manifestations of that trait was an arrant disregard for his health. He had ignored not only his health but everything else about his body except its enormous appetite for good food. At a height of five feet eight inches, Bob DeMatteis weighed 320 pounds. To his family, a large circle of friends, and to those many townspeople who came to him for help in solving a problem, this misanthropic-looking fellow was a warmhearted, gregarious man. Nevertheless, the first sight of his Harry the Horse build and the scowl above it had the effect of intimidating the faint of heart. He was as intense in his loyalties as he was in his conflicts, a man accustomed to deference. The menacing quality of his low-pitched, gravelly voice made even tenderness sound like a growl.
Bob seemed hardly the sort of man who would cringe at the sight of a young woman carrying a hypodermic syringe. He joked about his fear, but it sometimes stood in the way of proper care, and more than once during the trauma hospitalization it prevented me from treating his wounds in an optimal manner.
With all of these fourteen-year-old recollections as background, I was not pleased when Bob’s internist called me one mid-May afternoon. Bob had been admitted that morning after passing a large quantity of fresh blood rectally, and was being transfused on the medical floor. When I saw him he provided an interesting clue that made me think he had actually been oozing very small amounts of blood for the previous several months, before the present sudden hemorrhage. He said that he had been experiencing a gradually worsening abdominal discomfort since February. He also described a subtle but definite alteration in the odor of his stools. The color had not changed but the new smell was unmistakable—it was produced by the presence of blood. A month earlier, when Carolyn had finally dragged him to his internist, protesting all the way, a series of X rays were done, which showed a superficial erosion of the duodenum but no ulcer. Some thickening had been noted at the ileocecal valve, which is the point where the small intestine enters the colon. Bob was reassured that no tumor was seen.
The rapid bleeding stopped within a few hours of Bob’s admission to the Yale–New Haven Hospital, and it was possible to carry out a complete evaluation of the gastrointestinal tract. Attention was focused on the colon rather than the upper portion because of the peculiar thickening seen on X rays as well as a few of the physical findings. We were not surprised when the fiberoptic visualizing instrument called a colonoscope revealed not a thickening but a tumor at the ileocecal valve.
Predictably, Bob reacted with hysteria to the news that he would need an operation, to which he flatly refused to agree. When he calmed down a little, he began to growl and complain and even swore a bit, but the patient urging of his wife finally brought him to consent. I don’t think I have ever taken a more frightened person to the OR. I always try to be at a patient’s side while the anesthesia is induced, so that I can speak to him and hold his hand, but being with Bob was a totally new kind of experience. Afterward, I had to massage my fingers for a few minutes before beginning to scrub, because he seemed to have squeezed the blood out of them by the time he reluctantly allowed himself to go under.
The operative findings were a shock. Expecting to see a relatively small tumor that had ulcerated just enough to bleed, what I encountered was nothing less than (and here I quote from the pathology report) a “poorly differentiated primary adenosquamous carcinoma arising in cecum adjacent to ileocecal valve, exhibiting transmural [through the wall] invasion into peri-colic fat, extensive lymphatic and vascular involvement and metastases to 8 of 17 lymph nodes.” The center of the tumor was necrotic and deeply ulcerated, which accounted for the episode of brisk bleeding.
Although there was as yet no visible evidence of distant metastasis, Bob’s cancer was obviously very aggressive. With such extensive invasion of the blood vessels and lymph channels, the presence of large numbers of cancer cells in the general circulation was a certainty. It was almost equally certain that there were already some deposits in the liver that were still either microscopic or simply too deep to feel. It would be only a matter of time before they gave some overt evidence of their presence. Bob’s prognosis was terrible.
Bob DeMatteis was as blunt and direct as he looked, and he had a fine ear for evasion. He demanded to know exactly what he was facing, page and number—no details were to be left out. My behavior with Harvey notwithstanding, I have always tried to set the stage for patients to ask for full disclosure, and I welcomed his questions even though I anticipated that I might regret the unadorned candor he seemed to demand. I took him at his word, expecting him to break down into hysteria and lapse later into profound depression. It never happened.
There was no emotional outburst—not a bit of it. Calm, reason, and acceptance took its place. As early as their period of courting, Bob had told Carolyn (and to this day she does not know why) that he did not expect to see his fiftieth birthday, and his prophecy was about to be fulfilled. At the end of our first postoperative conversation, Bob knew he was going to die of his cancer, and he planned to let it happen without interference. He was not a religious man, but he had an abiding faith in himself, which at this point became the gyroscope that stabilized his remaining time.
Bob reckoned without the oncologists. In view of (by my lights,
in spite of
) the advanced state of disease, the option of consultation was given to him after his wife and internist had initiated the idea. Neither he nor I had any enthusiasm for it, but he agreed to speak to an oncologist, if for no other reason than to placate Carolyn, who was determined that no possibility go unexplored. At that point (and even now, more than a decade later), I had never had a single experience in which an oncology consultation did not result in a recommendation to treat, unless the disease was so early that surgery had definitely cured it. Bob’s case was no exception, and Carolyn prevailed on him to accept the course of therapy being offered.
in spite of
) the advanced state of disease, the option of consultation was given to him after his wife and internist had initiated the idea. Neither he nor I had any enthusiasm for it, but he agreed to speak to an oncologist, if for no other reason than to placate Carolyn, who was determined that no possibility go unexplored. At that point (and even now, more than a decade later), I had never had a single experience in which an oncology consultation did not result in a recommendation to treat, unless the disease was so early that surgery had definitely cured it. Bob’s case was no exception, and Carolyn prevailed on him to accept the course of therapy being offered.
The chemotherapy had to be delayed for a reason almost unique to very obese people: The enormous layer of fat under Bob’s skin was much too thick for me to consider closing it at the time of the operation, lest a hidden abscess develop in its depths. In order to guarantee clean healing, I was forced to leave it open to seal from bottom to top, which held up the drug treatments for an extended period. By the time they could be started, the liver metastases of this rapidly expanding tumor had grown large enough that they could be identified with radioactive isotope studies.
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